Home Control through Trust and Estate Planning  
Theresa M. Varnet, M.S.W., J.D. & Richard C. Spain, J.D., L.L.M.
June 1995
Spain, Spain & Varnet, P.C.
33 North Dearborn St. Suite 2220
Chicago, IL 60602
(312) 220-9112
Fax: (312) 220-9261
  This manual was funded through a grant from the Illinois and Missouri Planning Councils on Developmental Disabilities and reprinted with the permission of Sheila Romano, Illinois Council on Developmental Disabilities

TABLE OF CONTENTS
INTRODUCTION
CHAPTER 1
WHERE WE WERE — A HISTORICAL OVERVIEW OF
RESIDENTIAL OPTIONS AVAILABLE TO PERSONS
WITH DEVELOPMENTAL DISABILITIES
CHAPTER 2
TAKING STEPS — PLANNING FOR THE FUTURE AND
INCREASING OPPORTUNITIES FOR HOME OWNERSHIP 5
CHAPTER 3
A KEY COMPONENT — UNDERSTANDING GOVERNMENT BENEFITS 8
CHAPTER 4
ON THE ROAD TO HOME OWNERSHIP AND CONTROL —
CAREFULLY PRESERVING ELIGIBILITY FOR GOVERNMENT BENEFITS THROUGH PROPER ESTATE PLANNING 17
CHAPTER 5
DEVELOPING A PUBLIC/PRIVATE PARTNERSHIP —
INCREASING HOUSING OPTIONS FOR PERSONS
WITH DEVELOPMENTAL DISABILITIES
CHAPTER 6
VARIOUS WAYS PROPERTY CAN BE HELD
APPENDIX A STATE LAWS, FEDERAL LAWS AND COURT DECISIONS AFFECTING HOME OWNERSHIP AND CONTROL
APPENDIX B FREQUENTLY USED ESTATE PLANNING TERMS
APPENDIX C CASE EXAMPLES
APPENDIX D SELECTED BIBLIOGRAPHY
APPENDIX E ADDITIONAL RESOURCES
APPENDIX F SAMPLE HOUSING BUDGET
INTRODUCTION
This informational manual on the topic of home control and home ownership for persons with developmental disabilities has been prepared to provide individuals and families with a resource which will assist them in their effort to secure more control over their housing. Information about government benefits, trusts, estate planning and financing strategies for obtaining a home is presented. The information presented is necessarily general in nature — there is no one "set" path which can be charted. Nonetheless, considerations are explored and some solutions are offered. Each situation is necessarily as unique as the individual involved, but a central focus should be to explore all options, including options which may not necessarily seem to be applicable to persons with disabilities.
While many persons with developmental disabilities live at home with their families by choice, others do so only because other options are not available. Even if by choice, the ability to live with family members often ends with the death of the parents of the person with a developmental disability.
This manual will evaluate the major barriers to independent living for persons with disabilities. It will also discuss how persons with disabilities and their families can overcome these barriers and live in a home of their own. Persons with developmental disabilities routinely face two major barriers to living in a home of their own:
  1. lack of finances, and
  2. lack of community-based support services.
Due to a financial reliance on subsistence level government benefits (such as Supplemental Security Income (SSI) or Social Security Disability Income (SSDI)), people with developmental disabilities are generally unable to afford a home of their own. Even where individuals with disabilities have families who are able to assist them with the purchase of a home, the family is often not in a position to provide the necessary supports that make it possible for the individual to live separately from his or her family.
Several events have come together in recent years which bolster the efforts of persons with disabilities in overcoming these barriers, making planning for home control a much more realistic option.
These events include: The information provided will, hopefully, empower persons with disabilities and their families to explore alternative housing options to those that currently exist in Illinois and Missouri under the traditional "provider-based" service delivery system. The subjects of estate planning and preserving eligibility for government benefits can be extremely complicated subjects. Families should, however, use this information to better inform themselves of the choices available to them.
This manual is certainly not intended as specific legal advice. As such, when planning for the future, accessing the services of an attorney and a financial planner, and other "resource" persons as may be appropriate, who are knowledgeable about the needs of persons with developmental disabilities, is clearly in order.
The research and writing of this manual was funded through a grant from the Illinois Planning Council on Developmental Disabilities and the Missouri Planning Councils for Developmental Disabilities. The authors thank Mary Beth Kane, Arlyn G. Miller and Mia H. Lahti for their contributions in researching and writing this manual. Special thanks to Barbara Blee Maille of Danna, Soraghan, Stockenberg & Shaw, P.C. in St. Louis, Missouri for her advice regarding Missouri laws and regulations.

The contents of this manual and any opinions expressed are those of the authors and do not necessarily represent the policies of the Illinois and Missouri Planning Councils.

CHAPTER 1
WHERE WE WERE — A HISTORICAL OVERVIEW OF RESIDENTIAL OPTIONS AVAILABLE TO PERSONS WITH DEVELOPMENTAL DISABILITIES
Until recently, individuals with moderate, severe or profound mental retardation or other developmental disabilities have had few choices regarding where they would live when their parents died or were otherwise no longer able to care for them. If they were fortunate, perhaps another family member was able to continue to care for them. However, where there was no family member able to provide them with housing and supervision, they were often "placed" in emergency respite care, admitted to a state institution or a community-based facility such as an Intermediate Care Facility for the Developmentally Disabled (ICF/DD) or a group home. The individual was thus forced to face the twofold grief and trauma of the loss of his or her parents as well as the loss of everything that had been familiar to him or her. With careful planning today, families may often avoid this devastating result.
In the 1970's, advocates for persons with disabilities and their families began to organize to increase alternative residential options in less restrictive surroundings. However, the number of community-based, less restrictive group homes or supervised apartments that has been developed has failed to keep pace with the demand for such less restrictive settings. While these community-based options offer more freedom and interaction with other persons in the community than did the institutional model that was developed in the late 1800's, these "home-like", less restrictive options still fail to provide a person with personal control and decision making over their own environment.
All people with developmental disabilities have the same rights as persons who are not disabled to enjoy life in the community in as normal an environment as possible. Persons who do not have disabilities have the right to live in a home of their choice, with roommates of their choice, in a neighborhood of their choice. This choice exists, of course, within the parameters of their monthly income and ability to afford certain types of housing. The fact that persons with disabilities are systematically denied this same basic liberty of where and with whom they shall live creates a civil rights issue of major significance. At long last advocates are beginning to realize that if persons with disabilities are to enjoy equality of opportunity, they must be allowed more control and say over where they choose to live.
Under traditional service delivery systems in Illinois and Missouri, persons with disabilities are still primarily living at the will of a service provider who controls his or her housing options. While group homes are less restrictive than institutions, group homes do not allow a person with a disability control over his own environment. Policy makers, in considering the delivery of residential services to people with developmental disabilities, need to use a common sense approach which focuses on enabling people with disabilities to choose among housing options which are the same or are at least similar to the options to which persons who are not disabled have access and, in fact, normally choose for themselves. Acceptance of the principle that persons with disabilities are more like us than not changes the focus of planning for future housing options.
A person should not have to move, or at least not necessarily, because the individual's needs increase or decrease. Policies (and programs) need to be developed which will allow the level of support to change rather than which require the discharge of a person to a different "home" that can provide the necessary level of support. In addition to the constant possibility of loss of a person's home due to a change in needs, people who live in group homes often also lack personal liberty within their home. A facility, regardless of how "homey" it appears, is not a home as long as adults have to ask permission before they can invite a friend to visit, ask permission to get a snack after dinner, or use the phone. It is not a home if staff have the power to violate a person's privacy by going into his or her room at any time, looking through a person's closet or regulating their leisure time. It is not unusual for people with disabilities to have to spend all of their leisure time together, attending the same activities or events due to the need to maintain a proper "staffing pattern".
When a person thinks of "home", they think of a private place which is safe and secure and where they have control over the environment. Whether a person is renting or owns his own home, there is a sense of belonging and security when a person has a choice over where and with whom he or she lives. A home provides a personal and private space where one can relax, invite friends to stop by or just choose to be alone — depending on how one feels at any given time. Unfortunately, this is often not the case when a person lives in a group home - even a small "home-like" group home.
Housing options that enable persons with disabilities to think of their home as do persons who are not disabled are clearly the ideal. There are those who will reject this ideal as unrealistic; impossible to achieve. But is it really? This manual is being written at a time when service providers and policy makers are beginning to recognize the need to develop policies that enable people with disabilities to have the same housing choices that the rest of us enjoy. The self advocacy movement, civil rights legislation, and a literal explosion of new technology and assistive devices that provide in-home technical assistance which enable even persons with severe disabilities to live alone, are forcing a re-examination of traditional concepts about service delivery and housing options. With cautious optimism, it seems relatively clear that persons with developmental disabilities and their families can look forward to a number of new funding options in the near future which will enable them to live in and have control over a home of their own.

CHAPTER 2
TAKING STEPS — PLANNING FOR THE FUTURE AND INCREASING OPPORTUNITIES FOR HOME OWNERSHIP
Of great concern to parents of persons with disabilities is the question — "What is going to happen to my child when we die?" Persons with disabilities are often dependent upon their parents or other family members to supplement the cost of their care over and above any government benefits they receive. Often the supports persons with severe and profound disabilities receive from family members in the form of housing or supervision make it possible for them to live in the community. In planning for the death of a primary caretaker, parents must give careful thought to how those support services will continue to be provided.

Q. WHAT ISSUES DO FAMILIES NEED TO CONSIDER IN PLANNING FOR THE TIME WHEN THEY ARE NO LONGER ABLE TO PROVIDE SUPPORT FOR THEIR FAMILY MEMBER WITH A DISABILITY?
Consideration must be given to the nature and severity of the particular disabling condition of the person, the interests and housing preferences of that person and the various local, state and federal programs available to benefit the individual.
Families seldom add up the costs of the various forms of support they give to a family member with a disability. Those parents who contend that their child's financial needs are minimal often forget to add up the cash value of the many services they provide their child: serving as their child's advocate, service coordinator, companion, guardian (or agent under a health care power of attorney), job coach, chauffeur, personal care attendant, money manager and recreation director. These services add immeasurably to the quality of their child's life. If the parent dies without planning for the continuation of these services, the quality of life that the person with a disability previously enjoyed is likely to be reduced substantially.
While some of the services previously provided by family can be duplicated by the government, many cannot. It is essential to determine how much it will actually cost to buy the supports and services which are not generally provided by the state.
It is equally important that parents establish a specialized trust to protect their son's or daughter's inheritance. Without careful estate planning, an inheritance will jeopardize a person's eligibility for government benefits. If disqualified for government benefits by virtue of an inheritance, the inheritance will have to be spent on basic care and support. The money will likely be quickly depleted and when used up, there will be no funds to pay for those services the government does not provide. A "special needs" or discretionary trust created for a person with a disability offers that person more housing options and is a key part of future planning for families with a member with a disability.

Q. WHEN SHOULD FAMILIES BEGIN PLANNING?
It is never too early or too late to start planning. An ideal time to begin planning for the future and considering housing options is when the individual is in junior high school. This coincides with the school's duty to plan for the special education student's transition from school to adulthood and independence. By junior high, the family often has a clearer picture of the supports and services their family member will likely need. However, there is nothing wrong with planning earlier — none of us has a crystal ball to tell us how long we have to plan.

Q. WHAT STEPS SHOULD FAMILIES TAKE WHEN PLANNING FOR THE FUTURE?

  1. Families need to become familiar with public and private, local, state and federal programs and agencies that offer supports and services to people with disabilities and their families, who are many times, also low income.
  2. The family member's preferences and ability to participate in decisions regarding residential options and future care and support needs must be determined.
  3. A determination needs to be made of the resources which will be needed to supplement the care and support the family member will receive from the government.
  4. The family needs to meet with an attorney knowledgeable in this specialized area of estate planning — one who understands the government benefits and programs available to provide supports and services for persons with low incomes and/or disabilities. In order to write a will or trust document which preserves eligibility for government benefits, knowledge of the eligibility requirements for those needed government benefits is critical. Certainly, too, a more conventual goal of minimizing estate taxes becomes particularly relevant since it will help maximize the inheritance of the family member with a disability.
  5. The family needs to determine the percentage of the family's assets which will need to be held in trust to meet the needs of the family member with a disability after the parents or caretaker dies. If that percentage is disproportionately high; that is, if it results in disinheritance of or a reduction of an inheritance to other heirs who are not disabled, the impact which that may have on the other family member's willingness to provide services (i.e., the other family member may be the one named to act as trustee of a trust for the beneficiary with a disability or as advocate or guardian) must be considered. It may be possible to augment an inheritance to a family member with a disability through life insurance or other planning.
  6. The family should meet with a financial planner who is familiar with government programs for persons who are disabled to discuss how the family's assets can be preserved or invested to better meet the needs of the family member who is disabled.
  7. If home ownership is a goal or priority, the family should meet with a knowledgeable real estate broker who is familiar with federal and state home ownership assistance programs available for persons who are low income and/or disabled.
  8. Having done careful planning, the information garnered needs to be preserved. Much of the planning will be incorporated into crucial estate planning documents, but other equally important information should be otherwise recorded to assist those who take over when parents can no longer be the primary caretakers. A resource file of the information learned should make for a smoother transition. Many professionals have formats for a so-called "letter of intent" to give parents a framework for recording essential information for those who succeed them.
  9. Last, but certainly not least, the family must write wills which include a special needs trust. A special needs trust is a trust used to provide supplemental care; care that is over and above what the beneficiary is able to obtain through his or her own earnings and/or through government benefits. A properly worded special needs trust will not jeopardize government benefits — which benefits may, in fact, be more valuable than an inheritance.
CHAPTER 3
A KEY COMPONENT — UNDERSTANDING GOVERNMENT BENEFITS

Few families can afford to pay for all of the supports and services needed by a family member with a disability. When the primary caretaker dies, the family member with a disability is in even greater need of the basic care and support provided by the government. Knowledge of government benefits is critical. Families are often overwhelmed and intimidated by the agencies that provide services — who provides what and to what extent?
It may help to understand that, conceptually, there are only three basic types of government benefits. All programs and services fit into one of these three types:

  1. Entitlement Benefits (benefits not based on financial need — such as social security disability income and medicare);
  2. Welfare Benefits (benefits based on financial need — such as supplemental security income, medicaid, food stamps, and Section 8 housing subsidy); and
  3. Sliding Scale Fee Government Benefits (benefits based on a person's ability to pay determined by his resources and income — such as certain services available from the Division of Mental Retardation and Developmental Disabilities in Missouri or the Department of Mental Health and Developmental Disabilities in Illinois).

Q. WHY DO MIDDLE OR UPPER INCOME FAMILIES NEED TO BECOME FAMILIAR WITH WELFARE BENEFITS?
If the income of a person with a disability is limited to SSI (Supplemental Security Income) or SSDI (Social Security Disability Insurance) and, perhaps, part time wages, he or she may be eligible for many of the programs that are available for low income families. By becoming familiar with low income and welfare programs, families can often obtain more services for the family member with a disability than if they simply apply for services available through agencies that serve persons with disabilities.

Q. HOW DOES A PERSON WITH A DISABILITY BECOME ENTITLED TO SOCIAL SECURITY DISABILITY INCOME (SSDI) OR MEDICARE?
There are two ways that a person can become entitled to SSDI and Medicare. A person can be eligible for SSDI either through his or her own work record or under the work record of his or her parents. These programs are referred to as entitlement programs because the recipient is "entitled" to receive benefits from them based on money paid into them.
If a person has worked and paid into the social security system, he or she will become eligible if, due to a mental or physical disability, they are no longer able to work. How much money the person receives under SSDI depends on how long a person worked and how much money the person made while working. After two years of receiving SSDI, a disabled individual will also receive medicare coverage. Medicare is a federal health insurance program that is paid for with contributions into the social security trust system.
If a person with a disability has never paid into the social security system, he or she may still be eligible for SSDI benefits as a dependent adult child (DAC) if the following conditions apply:

Q. HOW WILL AN INHERITANCE AFFECT A PERSON'S ELIGIBILITY FOR SSDI OR MEDICARE?
An inheritance will not affect a person's eligibility for SSDI or medicare. An individual's eligibility is based upon the inability to be gainfully employed and whether or not the individual or his or her parent has paid into social security. How much money he or she inherits or has in the bank does not affect his or her eligibility for SSDI and medicare. SSDI and medicare are also not affected by unearned income so that if an inheritance is invested and pays a monthly dividend income check to the person with a disability, he or she will still be eligible. However, it is seldom a good idea to leave a direct inheritance for a person who is developmentally disabled. An inheritance may trigger the need for a guardian of the estate which is a costly and sometimes intrusive way of protecting a person's assets. Even if no guardianship is deemed to be warranted, the person with a disability may still lack the sophistication to appropriately handle an inheritance.

Q. WHAT HAPPENS IF A DEPENDENT ADULT CHILD (DAC) MARRIES?
If he or she marries another person who is receiving benefits as a "dependent adult child", then benefits will continue. If he or she marries a person who is not entitled to DAC benefits, then he or she will lose their eligibility for SSDI and medicare benefits.

Q. ARE THERE OTHER ENTITLEMENT BENEFITS BESIDES SOCIAL SECURITY DISABILITY INSURANCE (SSDI) AND MEDICARE?
Yes. If an individual with a disability or either parent of a "disabled adult child" paid into other retirement plans such as state workers', teachers', firemen's or policemen's retirement programs, he or she may be eligible for additional benefits. A parent should contact their personnel department to determine if the child is eligible for benefits if the child meets the criteria of a "dependent adult child".

Q. WHAT IS THE DIFFERENCE BETWEEN SOCIAL SECURITY DISABILITY INCOME (SSDI) AND SUPPLEMENTAL SECURITY INCOME (SSI)?
Social Security Disability Income (SSDI) is a social security insurance program that provides financial assistance for workers and for some of their dependents if the worker has paid into the social security trust fund system.
Supplemental Security Income (SSI) is a welfare program available for needy or low income people who are elderly, blind or disabled. A SSI recipient does not have to have worked nor paid into the social security system. A person with a disability must be "poor" in order to be eligible.
Both programs require that a person be incapable of substantial gainful activity; however, only SSI looks at how much money or other assets a person has in determining eligibility.

Q. IS A PERSON WITH A DISABILITY ELIGIBLE FOR SSI IF HIS OR HER PARENTS ARE NOT POOR?
Up until the age of 18, the assets of the parents are counted as being the assets of the child with a disability. In order for the minor child to be eligible for SSI, his or her parents must be low income.
Once a person turns 18, the parent's assets are no longer counted. A person from a very wealthy family can be eligible for SSI as long as he or she does not have money or assets, beyond the modest permissible limits, in his or her own name.

Q. WHAT IS THE DIFFERENCE BETWEEN MEDICARE AND MEDICAID?
Medicare is a health insurance program funded by the Social Security Act. Medicare, like SSDI, is funded through payroll tax contributions into the social security trust system.
Medicaid is also a health insurance program but it does not require that a person have paid into the social security system in order to be eligible. Medicaid is a health insurance program for persons who are disabled and poor.

Q. CAN A PERSON BE ELIGIBLE FOR BOTH MEDICARE AND MEDICAID?
Yes. If a person is eligible for medicare either through his or her own work record or as a "disabled adult child" (DAC) and he or she is poor and meets the income and asset requirements of medicaid, they can also receive medicaid in addition to medicare.

Q. CAN A PERSON RECEIVE MEDICAID IF HE OR SHE IS ALSO COVERED BY A PRIVATE HEALTH INSURANCE POLICY?
Yes. Many people incorrectly believe that private health insurance results in ineligibility for medicaid. If a person is poor, he or she is still eligible for medicaid. Medicaid is always the payor of last resort. That is, medicaid will pay the bill only if the private insurance will not. Medicaid is therefore helpful in paying co-payments on private insurance or on deductible charges.

Q. IF A PERSON WITH A DISABILITY HAS PRIVATE HEALTH INSURANCE, DOES THE INDIVIDUAL STILL NEED MEDICAID?
Definitely, yes. Many families do not fully understand the significance of medicaid. While private health insurance is generally superior in many ways to medicaid, most insurance policies will not cover the cost of residential services that are not medically needed. It is critical that a person retain his or her eligibility for medicaid because many community-based services are only available to persons who are "medicaid eligible". Under the Medicaid Funded Home and Community-Based Waiver Program, a number of support services are available to persons with disabilities who are living in the community. Families need to remember that medicaid is a public assistance program for people who have limited incomes. In order to be eligible, the person with a disability has to have income and assets below the poverty level. Persons who qualify for medicaid can receive supports and services that make home ownership and control more possible than for people who are not medicaid eligible.

Q. ARE THERE OTHER WELFARE BENEFITS AVAILABLE TO HELP PERSONS WITH DISABILITIES?
If a person has a disability and is poor, he or she may be eligible for food stamps, Section 8 housing subsidies, low interest housing loans, and fuel assistance in addition to SSI and medicaid. These benefits, when coupled with private resources provided by a special needs trust, are often enough to enable a person with a disability to live in his or her own apartment or home.

Q. HOW MUCH MONEY AND WHAT OTHER ASSETS CAN A PERSON HAVE AND STILL QUALIFY FOR WELFARE BENEFITS UNDER THE ABOVE PROGRAMS?
Table 1 on the following page illustrates the assets a person is allowed to have and still qualify for welfare benefits such as SSI, medicaid, food stamps and Section 8 housing.

TABLE 1
ILLINOIS MISSOURI
1. An individual can have up to $2,000 in cash assets in his or her name. (This includes, in addition to cash, stocks, bonds or mutual funds which can be converted to cash). 1. An individual can have up to $999.99 in available sources in his or her name. This includes liquid assets such as stocks, IRAs, bonds, or mutual funds that can be converted to cash).
2. Life insurance with a face value of $1,500. (If the life insurance has a face value greater than $1,500, then the cash value will be counted as a cash asset and included in the $2,000 limitation in # 1 above). 2. Life insurance with a cash surrender value of no more than $1,500. (If the life insurance has a cash surrender value greater than $1,500, then the cash value will be counted as a cash asset and included in the $999.99 limitation in # 1 above).
3. A burial plot. 3. A burial plot.
4. A prepaid funeral plan. 4. An irrevocable prepaid funeral plan, provided, however, that a cash surrender value of more than $1,500 will be an available resource.
5. Furniture and household goods worth up to $2,000 fair market value. 5. Household furnishings used by the applicant.
6. A home, regardless of its value, if the individual lives there. (NOTE: There are many problems involved with direct ownership which are discussed elsewhere in this manual). 6. A home, regardless of its value, if the home is providing shelter for its applicant, or his or her spouse or dependent child. (NOTE: There are problems involved with direct home ownership, which are discussed elsewhere in this manual).
7. A car, if the car is needed for transportation to work or for medical treatment. 7. One automobile or truck if it is the only vehicle owned.
8. Equipment needed due to an individual's handicapping condition. 8. Equipment needed due to an individual's handicapping condition.
9. Tools required by the person's trade. 9. Tools required by the person's trade.

In addition, federal SSI rules allow an individual to have:

  1. $20/per month income from any source (earned or unearned);
  2. the first $65/per month of earned income;
  3. food stamps;
  4. home energy assistance;
  5. food, clothing and shelter from certain private non-profit organizations approved by the local Social Security Office;
  6. resources set aside under an approved Plan For Achieving Self Support (PASS Plan).

Q. ARE THERE ANY OTHER PROGRAMS AVAILABLE THAT PROVIDE HELP OR SERVICES TO PERSONS WITH DISABILITIES WHO DO NOT QUALIFY FOR LOW INCOME OR POVERTY PROGRAMS?
Yes. There are a number of programs available to help people with developmental disabilities who have limited assets and income but are not necessarily poor. This third category of benefits is referred to as "sliding scale fee" benefits. Vocational rehabilitation agencies and mental health agencies that provide services to persons with developmental disabilities charge for services in relation to their ability to pay — that is, on a sliding scale fee.

Q. WHAT DOES SLIDING SCALE FEE MEAN?
How much a person pays for a service is determined by how much money he or she earns and how much they own in assets. As with welfare programs, some assets are not counted. These assets are called "exempt assets" and they are listed above.

Q. HOW WILL AN INHERITANCE AFFECT ELIGIBILITY FOR SLIDING SCALE FEE SERVICES?
If a person has assets in his or her name, he or she may have to pay for the same quality service that they would otherwise receive for free. These services may include case coordination (also known as service coordination), personal care attendants, vocational training, activities of daily living, residential supervision, money management, etc. If a person requires any of these services, a parent should leave the family member's inheritance to the trustee of a special needs trust for the benefit of the individual with a disability. That way, the money inherited will go further and will not have to be spent on services and supports that the government is able to provide.

Q. HOW DOES A PARENT KNOW IF HIS OR HER SON OR DAUGHTER WILL REQUIRE WELFARE OR SLIDING SCALE FEE SERVICES AFTER THE PARENT OR CARETAKER DIES?
In some cases it is fairly obvious that the family member with a disability will require all three types of government benefits after the parents or primary caretaker dies. When a family is not sure if sliding scale fee services or welfare services will be needed, it is recommended that they still plan their estate so that eligibility for welfare or sliding scale fee services will not be jeopardized. They should leave the inheritance meant for the family member with a disability to a special needs trust for the benefit of the person with a disability. That way, a parent is assured his or her child will remain eligible for all three types of government benefit programs in the event the child needs these benefits after the parent or caretaker dies.
In addition to writing a properly drafted will and special needs trusts, parents need to change the beneficiary on all of their insurance policies, pension plans, IRA's and other assets that include a named beneficiary. Parents and other family members must remember that naming a person with a disability as the beneficiary of a life insurance policy (or other direct beneficiary asset) will jeopardize eligibility for government benefits, just as a direct inheritance in a will would. Rather than name the person with a disability individually, the special needs trust should be named as the beneficiary. For example, the beneficiary of a will or insurance policy should be, "The Jennifer Jones Special Needs Trust", not Jennifer Jones.

Q. IF A PERSON WITH A DEVELOPMENTAL DISABILITY IS LEFT AN INHERITANCE DIRECTLY CAN HE OR SHE GIVE AWAY HIS MONEY IN ORDER TO QUALIFY FOR WELFARE OR SLIDING SCALE FEE SERVICES?
It is generally not possible for a person who has assets greater than $999.99 in Missouri or $2,000 in Illinois to simply give away his or her money in order to qualify for medicaid. If an individual has assets in excess of the exemption amount, it may be possible to spend the money on certain goods and services that are considered exempt assets. However, a person cannot give his or her money away in order to qualify for government benefits.
Recent changes in medicaid regulations may, however, offer additional planning options for persons with disabilities whose parents failed to appropriately plan for their future needs. In August, 1993, the Omnibus Budget Reconciliation Act (OBRA 1993) was signed into law. OBRA '93 allows a parent, grandparent, legal guardian or a court to place funds from an unexpected inheritance or lawsuit into a special needs trust for the benefit of the person with a disability. After the funds are transferred to the trust, the person with a disability will be eligible for medicaid. However, when the person with a disability dies, the state must be reimbursed the amount of medicaid dollars it has spent on the person. While this doesn't preserve the family's assets for other children who do not have a disability, it will allow a person with a disability to re-qualify for medicaid benefits and enjoy "supplemental" benefits for life.
Unless a lawyer specializes in medicaid, he or she is not likely to be familiar with this new law. The section of OBRA '93 law that describes this new trust is 42 USC 1396 (d)(4). The trust is referred to as a "(d)(4) trust" or as a "pay back trust" because the state is "paid back" for medicaid services provided. The safest and most cost efficient way to protect a person's inheritance is, however, to plan ahead whenever possible by creating a special needs trust, described in the next chapter.
It is also important to note that these new trusts do not preserve eligibility for sliding scale fee services. As of the date of this writing, the only way a person who is left an inheritance can re-qualify for sliding scale fee services is to spend his or her money on exempt assets or purchase services that he or she needs.

CHAPTER 4
ON THE ROAD TO HOME OWNERSHIP AND CONTROL — CAREFULLY PRESERVING ELIGIBILITY FOR GOVERNMENT BENEFITS THROUGH PROPER ESTATE PLANNING

Estate planning for families with a member who has a disability is a particularly complex process. Virtually everyone finds it difficult to contemplate their death. Parents of a child with a disability are even more anxious because of their concerns about what will become of their child. As a result, estate planning can be an especially emotional experience. It is also not unusual for parents to either feel too young to consider estate planning or to feel that they have so few assets that estate planning is not applicable to them.

Q. WHY DO PARENTS NEED TO WRITE A WILL?
Families need to write a will in order to ensure that their assets go to those specific persons who they want to inherit their money. A will also allows a parent to name a guardian for a minor child or an adult child with a disability who cannot handle finances or make personal decisions for him or herself.

Q. IF A PARENT DIES WITHOUT A WILL, WON'T THE SURVIVING PARENT SIMPLY RECEIVE ALL OF THE ASSETS?
If all of the family assets are held in joint tenancy, then the surviving spouse will inherit all of the assets. However, those assets not held in joint tenancy will be distributed according to the "intestacy" rules of the state where the parent resided at the time of his or her death. When a person dies without a will, the term used to describe their estate is "intestate".

Q. IF A PARENT DIES WITHOUT A WILL WON'T THE SURVIVING PARENT BE THE GUARDIAN FOR MINOR OR ADULT CHILDREN WITH DISABILITIES?
A surviving parent will continue to serve as the legal guardian of the person only of a minor child. This means the surviving parent continues to make day to day personal decisions for his or her child. However, the surviving parent must be appointed by the court as the guardian of the estate of a minor child in order to have control over the minor's assets. When the family member with a disability is an adult, the surviving parent must be appointed by the court to serve as the guardian of the person or of the estate of the adult with a disability. Many parents incorrectly believe that if their child has a severe disability, they continue to have the power to make personal and financial decisions for their child as they did when he or she was a minor. By writing a will that leaves the child's share to a trust, the parent can avoid the need for a guardianship of the estate. A guardianship of the estate can be a costly and sometimes intrusive means of protecting the assets of a person with a disability.
It is important for parents to understand that by not writing a will, their children will inherit a percentage of their assets. If the money is not directed to be paid to a special needs trust, then the child with a disability may need a guardian of the estate and may lose eligibility for government benefits.

Q. WHAT HAPPENS IF A PARENT DIES WITHOUT A WILL IN ILLINOIS?
In Illinois, the surviving spouse receives 100% of the estate if there are no children. If the spouse who died (called the decedent) had children, one-half is distributed to the spouse and the other half is distributed in equal shares to the decedent's children. If the children are minors or deemed "disabled" by the court, their share will be held under a guardianship of the estate — generally, a rather costly way of protecting the child's assets. Even when the surviving parent is appointed by the court to be the guardian of the estate, he or she must pay a bond to protect the minor from the possibility that the parent will improperly use the money. The guardian must also receive court approval for all distributions. The fees involved with annual accounts to the court and requesting court approval for distributions are paid from the guardianship estate and eat into the money available to the child. When the child reaches the age of 18, the money will be distributed outright to him or her (unless an adult disabled guardianship is then needed — which requires a separate petition).
Most parents would agree that there is a great deal of risk involved in giving money to a child who is only 18 because they are often not mature enough to spend or invest the inheritance wisely. Unfortunately, if there is no will, the child will obtain possession and have full control over his or her share of the inheritance at the age of 18. This could have a devastating impact on the decedent's spouse if, for instance, the child forced the sale of the family home in order to receive his or her fair share of the estate.

Q. WHAT HAPPENS IF A PARENT DIES WITHOUT A WILL IN MISSOURI?
In Missouri, when a person dies without a will, his or her spouse takes the entire share if there are no surviving children or parents of the decedent. However, if the decedent had children and these children are the children of the surviving spouse, or if the decedent had no children but is survived by one or both parents, then the spouse receives the first $20,000 and one-half of the balance of the intestate estate. If there are surviving children of the decedent, one or more of whom are not the children of the surviving spouse, then only 50% goes to the spouse and the other 50% is divided equally among all of the surviving children.

Q. IS IT NECESSARY TO WRITE A WILL EVEN IF A PARENT HAS A VERY SMALL ESTATE?
Yes. You must write a will if:

  1. you want your child to receive his or her share at an age later than 18,
  2. you want to be sure your spouse has sufficient income and ownership or benefit of the family home and assets until he or she dies,
  3. you want to avoid a guardianship for your minor or adult children with disabilities,
  4. you want to preserve your family member's eligibility for government benefits, and
  5. you want to avoid the necessity of bonding requirements.

Q. WHEN IS THE BEST TIME TO PREPARE A WILL?
Families should certainly not wait until old age to write wills. It is best to prepare a will and estate plan while still in good health and with the time to properly plan for the distribution of one's estate at death. Any share of the estate that is for the family member with a disability should be left to a special needs trust so that the family member does not lose eligibility for government benefits.

Q. WHAT IS A TRUST?
A trust is a legal agreement between two or more people where one person (called the grantor or settlor) places property in the name of another (an individual trustee) or a legal entity such as a bank (a corporate trustee) for the benefit of another person, known as the beneficiary of the trust. The trustee owns the property but has a legal duty to use the property for the benefit of the beneficiary and only according to the terms of the trust document.

Q. WHAT ARE THE ADVANTAGES OF USING A TRUST TO PROVIDE FOR THE BENEFIT OF A FAMILY MEMBER WITH A DISABILITY?
An inheritance that is directed to a trust will avoid the need for a guardianship of the estate in the event the person with a disability is unable to handle his or her assets. For a child who is receiving government benefits or is likely to do so, the type of trust recommended is called a "special needs", "discretionary" or "luxury" trust.

Q. HOW DOES A "SPECIAL NEEDS" TRUST DIFFER FROM A "SUPPORT" TRUST?
In a "support" trust, the trustee holds the money for the benefit of the beneficiary, with the duty to pay for the beneficiary's general support. Sometimes a support trust includes "discretionary" language which says any distributions from the trust are in the discretion of the trustee. However, when the beneficiary is receiving government benefits that are either welfare benefits or sliding scale fee benefits, many states have successfully forced the trustee to reimburse the state for the cost of providing state funded services and supports to the beneficiary.
In a "special needs" trust fund, the trust specifically says that the trustee can only distribute assets if it will not jeopardize eligibility for government benefits. All distributions are limited to goods or services that are not provided by the state. In other words, the "special needs" trust fund supplements government benefits rather than supplanting them.
It is important for families and attorneys to keep in mind that the wording of the trust is critical to preserving eligibility for government benefits. A trust which requires distribution of income or principal may disqualify a person from receiving SSI or medicaid benefits. The quality of the person's life will generally not be enhanced if the income from the trust results in a decrease in government benefits. It is important that parents ask their lawyer if he or she is familiar with "special needs" trusts and the special language required to avoid the loss of government benefits. Most general lawyers and even some estate planning lawyers are not familiar with special needs trust funds. You need to be sure your lawyer understands that the trust is to preserve eligibility for government benefits and not just to provide support or avoid the need for a guardian.

Q. IS A WILL THE ONLY WAY TO TRANSFER ASSETS FOR THE BENEFIT OF A FAMILY MEMBER WITH A DISABILITY?
No. A parent or other family member can establish a "special needs" trust during his or her lifetime and make gifts of cash or real estate to the trust. Other family members (grandparents, aunts, uncles, for example) can also name the trust as the beneficiary in their own will or for life insurance policies, pension plans or Individual Retirement Accounts (IRAs).
If the trust is created while the person (grantor) is still alive, it is called a "living trust" (or inter vivos trust). If the trust is created in a person's (grantor's) will, it is called a "testamentary trust".

Q. HOW DO YOU DECIDE IF IT'S BETTER TO LEAVE A TESTAMENTARY TRUST OR A LIVING (INTER VIVOS) TRUST?
Whether you leave an inheritance in the form of a testamentary trust or an inter vivos trust depends upon a number of variables.
A testamentary trust does not go into affect until after the parent (the grantor) dies. Because it does not exist until the death of the grantor, other relatives who die first cannot make gifts to the trust or name the trust as a beneficiary of their insurance policies or in their wills.
A living (or inter vivos) trust is established while the parent (grantor) is still alive. The parent can leave the trust largely unfunded until he or she dies and the trust will be more fully funded upon the death of the parent. The parent also has the option of transferring some but not all of his or her assets to the trust while the parent is alive. Another advantage of an inter vivos trust is that other persons can make gifts to the trust or designate an inheritance for the person with a disability in their own wills by naming the trust as beneficiary.
In summary, the big difference between a living (inter vivos) and a testamentary trust is that the living (inter vivos) trust can accept gifts as soon as it is created. The testamentary trust does not come into existence until the person who has provided for it in his or her will dies.
There are other probate laws which may affect the choice between an inter vivos or a testamentary trust. For example, if the parent wants to name a successor trustee who lives out of state, the parent may need to preserve that option by creating an inter vivos trust. For a full explanation of the advantages and disadvantages of a living trust versus a testamentary trust, parents should consult an attorney who is skilled in the area of trust and tax laws.

Q. HOW DOES A PARENT CHOOSE A TRUSTEE? A critical issue in leaving money in any trust, and certainly a special needs trust, is the selection of the trustee. The person chosen needs to be responsible, trustworthy, and competent to invest and distribute the funds appropriately. The choice of a trustee depends on a number of variables, including the following:

While a trustee remains legally responsible for investment and distribution decisions as well as filing appropriate tax forms, he or she does not necessarily have to do all of this work himself or herself. The trustee can hire or consult with a financial planner, accountant, attorney or other professional to assist the trustee in managing the money held in trust.

Q. WHAT HAPPENS IF THE PERSON NAMED TO SERVE AS TRUSTEE DIES BEFORE THE BENEFICIARY?
A trust will never fail because there is no trustee. If the trust document does not provide for a successor trustee, the court will name a successor trustee. The court will usually name a bank to serve as successor trustee, so if the parent prefers that another family member serve, the parent should indicate this in the trust document. It is recommended, whenever possible, to name at least two or three successor trustees in the trust. A parent can also give the last named trustee who serves the power to name an additional trustee or trustees to succeed him or herself. This is especially wise when a parent is considering grandchildren as successor trustees.

Q. HOW DO FAMILIES DETERMINE IF THEIR LAWYER IS COMPETENT TO DRAFT A SPECIAL NEEDS TRUST FOR THE BENEFIT OF A FAMILY MEMBER WITH A DISABILITY?
Families with special estate planning needs have to be particularly careful when interviewing lawyers to draft their estate plan. They cannot assume the family's attorney is knowledgeable about special needs trusts. This topic is rarely, if ever, covered in law schools and most lawyers are not aware of the special estate planning issues concerning the preservation of government benefits.
If the family's attorney is already knowledgeable about wills and trusts and, if lacking specialized knowledge, is willing to research this area of law, he or she should be able to write a trust that will preserve the family member's eligibility for government benefits.
The following additional recommendations may assist the attorney who is inexperienced in drafting special needs trusts:

  1. In order to educate themselves about special needs trusts, the attorney should review the legal literature on this topic. Several excellent articles have been written on this subject and are included in Appendix D.
  2. The trust language should direct the trustee to purchase goods and services on behalf of the beneficiary and not to give the beneficiary money directly. It is important to remember that distributions of cash are considered unearned income and any distribution over $20 per month may jeopardize eligibility or result in a decrease in benefits.
  3. The beneficiary must not have the power to demand disbursements from the trust. All disbursements from the trust must be in the sole discretion of the trustee, limited by the intent of the settlor not to jeopardize benefits.
  4. Mandatory support language which refers to trust assets being used "for the general care, comfort and welfare" of the beneficiary should be avoided.
  5. The trust should include traditional "spendthrift" language to protect the trust assets from private creditors.
  6. Care must be taken to assure that any "boilerplate" language be appropriately modified before being included in a special needs trust. For example, many trusts give the trustee the authority to disburse smaller trusts to the income beneficiary — this would clearly be inappropriate for a special needs trust.
  7. Finally, it is recommended that the trust contain "self destruct" language directing distribution of the trust assets to a secondary beneficiary in the event the trust ever becomes subject to reimbursement to the state. It is highly unlikely that this will happen, but the mere presence of a self destruct clause may act as a disincentive to a state challenge of the trust.

Q. IF A FAMILY HAS ALREADY PREPARED A TRUST, HOW DO THEY KNOW IF IT IS A SPECIAL NEEDS TRUST?
The major difference between a special needs trust and a support trust can be found in the first portion of the trust which states the intent of the trust. If the trust says "the primary purpose of this trust is for the care, support and maintenance of my son or daughter...", the trust is a support trust. It may have discretionary language but its primary purpose is support and may jeopardize the beneficiary's eligibility for government benefits.
A special needs trust will have language similar to the following:
"All funds allocated to this trust are to be administered by the trustee solely for the benefit of the beneficiary. The beneficiary is developmentally disabled and the express purpose of this trust is to provide for the beneficiary's extra and supplemental needs, over and above the benefits she otherwise receives as a result of her handicapping condition from any local, state or federal governmental source or from private agencies any of which provide services or benefits to persons who are disabled. By way of illustration, the trustee may purchase those goods or services which shall enhance the beneficiary's development and happiness, including but not limited to: entertainment items, evaluations, training and educational programs, transportation to visit relatives and friends (or for relatives or friends to visit the beneficiary), and the like — all of the above to the extent not otherwise provided by federal, state or local governmental agencies and departments. Anything to the contrary herein notwithstanding, no trust income or principal shall be paid to or for the benefit of a governmental agency or department or used as reimbursement or otherwise to supplant or replace benefits received by the beneficiary for her care, comfort and welfare from federal, state and local governmental agencies and departments. The trustee shall first look to such governmental funds before making any payments from the trust estate and shall use trust assets only to supplement and never to substitute for such funds. In no event may trust income or principal be paid to or for the benefit of a governmental agency or department and the trust estate shall at all times be free of the claims of such governmental bodies."

Q. HOW CAN A TRUST INCREASE THE ABILITY OF A PERSON WITH A DISABILITY TO OWN HIS OR HER OWN HOME? A properly worded trust can provide the funds for the supports and services which the government does not provide, but which are needed by a person with a disability in order to live in his or her own home. The money held in trust can be used to buy household furnishings, adaptive equipment, electronic security devices, housekeeping services, a companion or an advocate. When these services are combined with assistance from the agency that provides services to persons with developmental disabilities, medicaid community and home support services and assistance available from subsidized housing programs, many persons with developmental disabilities are able to live in their own homes or in their own apartments.

Q. WHY CAN'T PARENTS JUST LEAVE THE FAMILY HOME TO THE FAMILY MEMBER WITH A DISABILITY?
While a home is an exempt asset, it is not recommended that a person who requires government assistance be left a home outright. The home is an exempt asset only as long as the person with a disability lives in the home. If the person with a disability requires prolonged nursing home care or if he or she should die, the home loses its exempt status. Often the home is the family's greatest asset. If there are other children who receive a smaller inheritance because the child with a disability was left the family home and the home is then subject to claims by the State if, or when the exempt status is lost, there may be hard feelings.
Leaving the home outright to the family member with a disability is like making a future gift to the State. If the family member is not able to live in the home, the State will force a sale of the home and require the person to pay privately for his or her care until the proceeds from the sale of the home are spent down to the poverty level. Also, upon his or her death, the State will place a lien on the property and reimburse itself for the cost of services provided during the family member's lifetime.

Q. SHOULD PARENTS CONSIDER LEAVING THE HOME TO A SPECIAL NEEDS TRUST FOR THE BENEFIT OF THE FAMILY MEMBER WITH A DISABILITY?
In some cases, that may be appropriate. However, parents must also be sure that the trust is funded with adequate cash assets to be able to pay for necessary home maintenance, repairs, insurance and taxes. It is also important for the trustee to be familiar with how distributions from the trust can affect the person's continued eligibility for government benefits.
For example, the trustee has to be aware of how providing free housing to the person who is receiving government benefits may affect his or her benefits. If the trustee allows the beneficiary to live in the home rent free, SSI will consider the non-payment of rent as "in kind support" and reduce the amount of the beneficiary's SSI check by one third. This will result in a reduction of income to pay other necessary expenses. The trustee will jeopardize the amount of money a beneficiary receives from SSI if the trustee pays for food, clothing, shelter, or provides more than $20 per month in spending money.
A trustee is able to make payments from the trust for telephone, condominium assessment fees (if the person with a disability lives in a condominium), housekeeper, laundry service, yard work, etc. without reducing the amount of the beneficiary's SSI check. If a trustee is unfamiliar with how distributions can and cannot be made, he or she should hire an attorney or advocate who is knowledgeable in this area.

Q. CAN A TRUSTEE GIVE THE BENEFICIARY OF A SPECIAL NEEDS TRUST FUND SPENDING MONEY?
No. A trustee can jeopardize eligibility for SSI and/or medicaid by distributing spending money directly to the beneficiary. The trustee needs to know that money received as gifts is counted as "unearned income". If a person receives more than $20.00 in spending money each month, his or her SSI check will be reduced by the same amount.
A person receiving SSI in 1995 receives $458 per month. If the trustee gives that person $100 per month spending money, his or her check will be reduced by $80. The recipient can keep the first $20 without it being counting against him or her, but the additional $80 in spending money will result in a direct reduction in the SSI received.

Q. HOW CAN A TRUSTEE AVOID THE LOSS OF SSI WHILE STILL PROVIDING THE BENEFICIARY WITH EXTRAS HE OR SHE CANNOT AFFORD?
A trustee can pay for a number of expenses that will subsidize the cost of owning a home and enhance the quality of the beneficiary's life without jeopardizing eligibility for SSI. For example, the trustee can pay condominium regime or special assessment fees, phone bills, maintenance and repair expenses, lawn care, housekeeping, laundry services, household furnishings, security devices, non-food grocery items such as paper goods and personal hygiene products, transportation, companion, or advocacy services. The trustee can also pay for luxury services and products such as haircuts, entertainment expenses (i.e. concert, movie or theater tickets), cigarettes, an advocate or companion etc.
The important thing for the trustee to remember is that the trustee cannot pay for food, clothing and shelter without jeopardizing the loss of one third of a beneficiary's SSI check. The trustee must also remember to pay for the above list of examples directly to the provider. The trustee cannot give the beneficiary the cash to purchase the above goods or services. All payments from the trust must go directly to the provider or vendor selling the service.

CHAPTER 5
DEVELOPING A PUBLIC/PRIVATE PARTNERSHIP — INCREASING HOUSING OPTIONS FOR PERSONS WITH DEVELOPMENTAL DISABILITIES

By using both public and private funds, a person with a disability is often able to enjoy a more independent lifestyle than he or she would otherwise enjoy. Many families are simply not in a financial position to leave sufficient assets in trust to enable the trustee to purchase a home outright, maintain the home for the beneficiary's lifetime and pay for all the support services necessary for independent living. However, by combining the assets of a trust with federal housing programs and support services available from vocational rehabilitation and mental health developmental disabilities or mental retardation state programs, home ownership can become a reality for many persons with a developmental disability.

Q. HOW CAN FEDERAL HOUSING PROGRAMS ASSIST A PERSON WITH A DISABILITY TO PURCHASE A HOME?
There are a number of financing programs available to persons who are low income and/or who have a disability. These programs reduce the cost of housing in three ways. These include:

Q. WHAT CAN FAMILIES DO TO ENSURE THAT THEIR FAMILY MEMBER IS ELIGIBLE FOR THE FEDERAL HOUSING PROGRAMS?
Families need to become familiar with the types of housing that are available for persons with limited resources who live independently. Many people who are poor and do not have enough money to live alone do so with the help of welfare benefits and housing subsidies. Families need to become familiar with the various kinds of welfare programs and housing subsidies that exist in their community. They must then write a will which will not disqualify the family member from being eligible for these programs.

Q. WHAT IF THE FAMILY IS OPPOSED TO THE USE OF THE WELFARE SYSTEM AND DOES NOT WANT THE MEMBER OF THE FAMILY WITH A DISABILITY TO BE "ON WELFARE"?
Some families, for personal reasons, are opposed to welfare programs and the benefits they provide. In that case, the family should meet with a financial planner to maximize the family resources available to subsidize the housing and support costs for the member with a disability. The family may also want to seek assistance from church, friends and extended family members to provide the supplemental support their child may need to live independently. Generally, unless a family has sufficient resources or a large network of church, friends, and family support, developing a private network of support that lasts the lifetime of the member with a disability is difficult and rare.
Planning to preserve eligibility for welfare type benefits places a safety net under the family member with a disability. If the individual's natural support network is unable to meet his or her needs, they can then still turn to the government for assistance. By planning to preserve eligibility for welfare type benefits, the family provides a back up support system in the event private supports prove to be inadequate. Preserving eligibility for government benefits thus increases the number of housing options available.

Q. WHAT FEDERAL HOUSING PROGRAMS ARE AVAILABLE TO ASSIST A PERSON WITH A DISABILITY TO PURCHASE A HOME?
Up-to-date housing information is available from the federal department of Housing and Urban Development (HUD). In Illinois, families can call the Illinois Housing Development Authority (312/ 836-5200) for information about HUD programs. In Missouri, families can call the Missouri Housing Development Commission (816/ 756-3790). It may be helpful to work closely with an informed real estate broker in locating properties and identifying subsidized financing strategies.
One way to reduce the cost of the property is to consider purchasing a home which has been repossessed. When a person fails to pay his or her mortgage payments, the bank is allowed to foreclose on these loans and claim ownership of the home. The banks are often anxious to sell the property they have foreclosed in order to minimize their loss on the unpaid mortgage and will often sell foreclosed homes for below market value.
Information regarding foreclosed properties is available from the following:

  1. The Federal Deposit Insurance Corporation (FDIC) - The FDIC will provide a list of foreclosed properties that are for sale. This list contains the name, address, description, price of the sale properties and the contact person and phone number.
  2. Housing and Urban Development (HUD). HUD takes over properties insured through the Federal Housing Administration (FHA). Because HUD tries to dispose of these properties quickly, one can often purchase homes for below market price.
  3. The Resolution Trust Corporation (RTC) was created by Congress to sell properties that were acquired from failed savings and loan institutions. The RTC, under a program called "Homeward Bound", gives priority to low-income individuals and families and nonprofit developers of low-income housing in disposing of these properties. The prices on these properties are often reduced drastically. There is a wide variety of homes available through the RTC. These include condominiums, townhouses, single family homes and multi-family homes.
The following is a list of programs that make housing more affordable by reducing the cost of financing:
  1. The Farmer's Home Administration (FmHA), a federal program, offers a "First Time Homebuyer Program". This program allows individuals or families who have limited income and are a first time homebuyer a mortgage at rates lower than market interest rates. This program also accepts a lower down payment than is customary and therefore allows persons with limited cash assets the ability to afford to purchase a home.
  2. HUD offers a program specifically aimed at reducing homelessness among persons who are disabled. This program is called "Permanent Housing for Handicapped Homeless Persons" and is authorized by the McKinney Act. Arguably, one can take the position that all persons who have a disability are at some point at risk of being homeless — in that one's parents do not have a duty to house their adult child.
  3. The Community Reinvestment Act (CRA) requires banks to invest in the community they serve. This Act was passed by Congress in 1977 and requires banks to assess the financing needs of the community, including the needs of low and moderate income neighborhoods. As a result, many banks earmark large sums of mortgage money to be invested in the communities they serve. Under this Act, a bank may allow an investor to take over a mortgage on a foreclosed property. The person assuming the mortgage on the foreclosed property would only have to repay the amount outstanding on the mortgage. In 1989, changes to this Act require banks to make public disclosure of its CRA rating. While the CRA does not require banks to give more favorable terms, many do so because it is the only way an individual or family can qualify. A low or moderate income person may be eligible for below market rates and/or may avoid the expense of a down payment by being allowed to take over an existing mortgage.
The following is a list of cash assistance programs:
  1. The Resolution Trust Corporation (RTC), mentioned above as a source of below market priced homes, also has a direct loan program that enables buyers to obtain a mortgage at market interest rates, but with a down payment of as little as 3-5%, depending on the price of the home and the household income.
  2. The Community Reinvestment Act may decrease the amount of cash needed to purchase a home if the lender decreases the amount of down payment required. As stated above, the lender is not required to do this but often does so in order to meet the community needs which it is required by law to serve. Lenders will seldom inform the buyer of this resource, so buyers need to be aggressive in pursuing a mortgage through the CRA that does not require a down payment.
  3. The HOME Program (Homeownership Made Easy Act) is another HUD program that is extremely flexible. (The HOME Program is administered in Illinois by Illinois Housing Developmental Authority (312) 836-5200. In Missouri, it is administered by the Missouri Housing Development Commission (816) 756-3790). This program was created by the National Affordable Housing Act of 1990 and affords state and local governments the ability to design their own housing strategies to meet local needs. Every five years a Comprehensive Housing Affordability Strategy (CHAS) Plan determines how these funds are to be utilized. The CHAS is a blueprint of how each community is making housing affordable for low income people. This five year housing plan is then updated every year so that it reflects the particular community's changing needs. Because this blueprint is developed on a local level, involvement by advocates of persons with developmental disabilities can help to make this program specifically responsive to the needs of persons with developmental disabilities. To maximize the benefit of this incredibly flexible program, advocates must become involved with developing the five year plan. HOME funds can be provided to persons on waiting lists for the Section 8 program, be used to rehabilitate rental or homeowner properties, and even to construct new property. Basically, the HOME program bridges the gap between what persons with low income can afford and the market cost of housing in the local community.
The following is a list of rental assistance programs:
  1. Rental Certificates pay the difference between the amount that is 30% of a tenant's income and his or her rent. One of the major drawbacks to this program is finding landlords who are willing to participate in it. Landlords are reluctant to participate because they must agree to accept the "fair market rate" that is determined by HUD. This so-called fair market rate is often below the real market rate. Therefore, some landlords are, obviously, unwilling to accept a lower rent than they could otherwise receive.
  2. The second rental subsidy program is a housing voucher program. The voucher provides a subsidy equal to the difference between the amount that is 30% of the renter's income and the fair market rate. Under the voucher program, a person may save money if s/he is able to find an apartment at a below market rate. If the person locates an apartment that is above market rate, the individual may end up paying as much as 50% of his or her income for rent.

Q. WHAT OTHER SUPPORT PROGRAMS ARE AVAILABLE FROM THE STATE THAT ENABLE A PERSON WITH A DISABILITY TO LIVE MORE INDEPENDENTLY?
There are a number of state mental health and developmental disabilities,and vocational training programs for persons with developmental disabilities that presently exist. When combined with the federal housing assistance programs and private assets from a trust fund, these state-run programs enable a person with a disability to have more control over his or her home environment.
There are state supported programs and options in Illinois which enable a person with a developmental disability to live more independently, some examples include:

  1. Community Integrated Living Arrangement (CILA): This is a flexible support arrangement for individuals with a developmental disability that focuses on the support needs of the person in his or her home, or a community setting where eight or fewer individuals with disabilities live together;
  2. Community Supported Living Arrangement (CSLA): This is a medicaid demonstration project which provides individually tailored supports as needed and chosen by a person with developmental disabilities in his or her own home.
  3. Medicaid Funded Home and Community-Based Waiver Program: This federal program has been available since the mid '80's but has only recently been expanded in Illinois and Missouri. It allows states the option of setting aside a portion of the state's federal medicaid funds to purchase community-based services. These services can include personal care attendants, homemaker services, case coordinators who can assist with accessing services, counseling, vocational training and assistance in developing skills in the area of self care.
There are state supported options in Missouri that enable a person with a developmental disability to live more independently. Because this is such a constantly changing area, it is recommended that a family member contact the state agency that serves persons with disabilities in his or her state for an up-to-date list of programs and options that provide supports to persons living in the community and the eligibility requirements for each.
In September of 1992, the Illinois Planning Council on Developmental Disabilities funded the "Consumer Owned/Controlled Housing Project" which was based on the belief that people with developmental disabilities have the fundamental right to live, work, and spend leisure time in natural community settings where friendships and other relationships can occur. It was the project's goal that home ownership become a viable option for people with disabilities. The benefits have been tremendous in breaking down barriers to home ownership allowing people with disabilities to live in their own homes in natural settings which they control. As a result of this project, the Council is expanding this initiative with "Project Ground Floor" which anticipates using funds to support at least one staff position within a service coordination agency to offer home ownership to individuals with developmental disabilities.
The address and telephone numbers for the Illinois and Missouri agencies that serve persons with developmental disabilities are listed in Appendix E.

Q. IF THE FEDERAL GOVERNMENT PROVIDES ASSISTANCE IN FINDING AFFORDABLE HOUSING AND THE STATE PROVIDES SUPPORT SERVICES, ARE PRIVATE FUNDS STILL NEEDED?
Yes. A properly drafted trust fund can make the difference between a person with a disability succeeding in his or her own home or not. One of the first things a family needs to address is how much money and how many support services the person with a disability will need to live independently. It is important to understand that, because of its limited resources, the state provides only the minimum amount of services needed by a person. Without additional supports, the family member may not be able to remain in his or her own home and may have to move to a more sheltered, segregated living arrangement.

Q. HOW DOES A FAMILY DETERMINE HOW MUCH MONEY IS NEEDED TO SUPPLEMENT THE COST OF HOUSING AND SUPPORT SERVICES PROVIDED BY THE GOVERNMENT?
It is recommended that families sit down with a financial planner who is knowledgeable about future goals for lifetime care for a person with a disability. The family should develop a list of all expected expenses associated with living independently and compare this list of expenses with the amount of anticipated income that the individual with a disability will receive on a monthly basis. In short, they should develop a budget which will provide for all of the supports and services needed by the family member to live in a home of his or her own.

Q. WHAT KIND OF EXPENSES SHOULD BE INCLUDED IN THIS BUDGET?
Developing a housing budget for a person with a disability is not very different than developing a budget for a person without a disability. At a minimum, the budget should include: rent or mortgage payments, heat, electricity, water and sewer, phone, maintenance, taxes, insurance, garbage pickup, food, clothing, transportation, personal hygiene needs, recreation and leisure time expenses. The family will also have to include the cost of adequate support services, including the cost of benefits such as workmen's compensation and the payment of social security taxes. A sample budget is included in Appendix F.
By combining the assets of a trust with federal and state housing and community support money, home ownership can become a reality for many persons with a developmental disability. The trust can also pay for household furnishings, electronic security devices, housekeeping and groundskeeping services, a companion or an advocate. While these services are seldom funded by the government, they are often needed by a person with a disability in order to live independently.

Q. WHAT STRATEGIES ARE RECOMMENDED BY FINANCIAL PLANNERS TO MAXIMIZE THE FAMILY'S RESOURCES?
There are several investment strategies available to maximize the estate parents have to leave their children. Parents may want to consider purchasing a "second to die" life insurance policy which will provide a larger payment to the child's trust when the second parent dies. A "second to die policy" is a single life insurance policy, but on the life on two people. The insurance company pays a death benefit only when the second person dies. The rates for this type of policy are generally substantially lower than the rates on individual policies. A financial planner may also recommend purchase of a tax sheltered annuity as a means of funding a special needs trust at a higher level than the parents' immediate resources are able to fund.
There is no one answer as to how much to leave to a special needs trust fund. Parents must take the time to develop a budget to determine how much money they believe is needed to supplement the cost of lifetime care. The goal is, clearly, to fund the trust with sufficient assets so that the income from the trust will be sufficient to provide the supplemental services needed by the family member. If a trustee must routinely dip into the principal of the trust to pay for needed expenses, the trust is less likely to last the beneficiary's lifetime.

Q. ARE THERE SPECIAL RULES THAT APPLY TO HOW THE TRUST FUNDS CAN BE USED?
A properly worded special needs trust will allow the trustee to spend assets for the sole benefit of the beneficiary but only in a manner which will not jeopardize the beneficiary's eligibility for government benefits.
For example, if the trustee allows the beneficiary to live in the family home that was gifted to the trust rent free, SSI regulations will consider the non-payment of rent as a gift of "in kind support" and will reduce the SSI check by one third. To avoid the beneficiary losing one-third of the SSI benefit, the beneficiary should pay the cost of his or her own room, board and clothing from his or her SSI check. Other expenses such as telephone, housekeeping, lawn work, condominium assessment fees, laundry service, etc. can be paid by the trustee. Payments for these services will not jeopardize government benefits.

Q. ARE THERE SPECIAL RULES THAT APPLY TO HOW THE TRUST FUNDS CAN BE INVESTED?
A trustee can invest the trust estate in any reasonably prudent manner. Unless so authorized, the trustee cannot make risky investments that could result in the loss of the trust assets. Obviously, the goal should be to maximize the amount of income earned while providing sufficient funds to draw on during the year. It is often important that the trustee receive advice from a professional in regard to investments and certainly in regard to distributions from the trust.

Q. WHO PAYS THE TAXES ON THE MONEY EARNED BY THE TRUST?
Each year the trustee will file a trust tax return with the Internal Revenue Service (I.R.S.) The amount of taxes due will depend on a number of variables, such as: how the funds are invested and how the funds are distributed during the year. The trustee must account for all income earned and all distributions from the trust. If the trustee is not familiar with how to file a trust income tax return, s/he should hire an accountant or tax attorney to file the annual income tax return and to advise him or her on tax matters relating to the trust investments.

Q. WHAT HAPPENS TO THE MONEY LEFT IN THE TRUST AFTER THE FAMILY MEMBER WITH A DISABILITY DIES?
Generally, the person who made the trust (the grantor) specifies where the money will go when the family member with a disability dies. The funds can be distributed for the beneficiary's brothers and sisters. The funds could also be given to the beneficiary's or the grantor's favorite charities. Where the money goes is completely up to the grantor(s) to decide and should be incorporated into the trust document before the trust is signed.

CHAPTER 6
VARIOUS WAYS PROPERTY CAN BE HELD

In order to better understand housing options, it is helpful to understand the various ways property can be held. Property can be held either solely by an individual or jointly with others. The following are explanations of the advantages and disadvantages of owning property as an individual or jointly.

  1. PROPERTY OWNED IN ONE'S NAME ALONE
    A person can hold title to property in his or her name alone. One of the advantages of sole ownership is that the owner can do as he or she pleases with the property. However, as a sole owner, the individual will be totally responsible for paying all of the costs associated with maintaining the home. It's important to note that home ownership will not exclude the individual from being eligible for most government benefits, including medicaid and SSI. A home is an exempt asset as long as the individual or that individual's spouse or dependent child lives in the home as his or her principal place of residence. A problem, however, arises if the individual leaves the home for six (6) months, as the state may then force a sale of the home and file a claim for reimbursement for all medicaid benefits paid during any period of ineligibility. The home will also become part of the individual's estate when he or she dies. OBRA'93 changes in the medicaid regulations allow the state to seek reimbursement against one's estate for any medicaid payments made on one's behalf during his or her lifetime. Therefore, it may not be advisable for a person with a disability to own a home in his name if he or she is a recipient of government benefits.
  2. PROPERTY OWNED IN JOINT TENANCY
    Assets such as bank accounts, real estate and an automobile may be owned in joint tenancy. Joint tenancy with rights of survivorship means that all of the joint tenants have the right to use the property, regardless of who originally purchased or owned the property. Upon a joint tenant's death, his or her interest in the property ends and the surviving joint tenant(s) get the deceased joint tenant's share of the property. One of the advantages of joint tenancy is that property held in joint tenancy does not go through probate at the time of the first joint tenant's death. Joint tenancy may be a good estate planning tool to provide for the disposition of property to another individual — who gets the property instantly at death, free of probate costs. Joint tenancy is most commonly used among married couples. It is seldom used when two or more unrelated persons are just sharing ownership of the home. Usually a person will want to preserve the value of his share of the property and pass it on to his heirs when he dies.
  3. PROPERTY OWNED AS TENANTS BY THE ENTIRETY
    A form of real property ownership available to a married couple as to their primary residence. Like joint tenancy, the real property passes automatically to the survivor by operation of law upon the death of one owner. It also offers the additional feature that a creditor cannot reach the property unless it is for an obligation owed by both. That is, if the husband owes a debt that the wife is not also responsible for, the property can not be reached to satisfy the debt.
  4. PROPERTY OWNED AS TENANTS IN COMMON
    Tenants in common have the right to use and share the same property. Each tenant in common owns a share of the legal title to the property in his or her name alone. Each tenant in common may transfer ownership of his or her share to a third party. When he or she dies, his or her interest in the property does not pass automatically to the surviving co-tenants as it does in joint tenancy. Instead, it passes as part of the deceased tenant's estate and will be distributed to his or her heirs at law or to the beneficiaries mentioned in his or her will, if the co-tenant has written a will. As with sole ownership, the state may place a lien on the estate of an individual who has received medicaid benefits during his or her life time. One of the advantages is that each tenant shares the expenses and responsibility of maintenance with others. However, if the co-tenant receives government benefits, the state may make a claim against his or her share should he or she move out of the home. This is so because it is possible to separate his or her share from the others.
  5. PROPERTY OWNED IN A LAND TRUST
    With a land trust, the trustee, typically a bank, holds legal title (ownership) to the real estate and the land trust agreement designates the beneficiary or beneficiaries of the land trust as well as who has the power of direction to direct the land trustee to act with respect to the real estate (i.e. to sell, lease or mortgage the real estate). The land trust agreement can spell out who is to get the land upon the death of the beneficiary. The state's ability to place a lien on the property depends on who has placed the property into the land trust and who has authority to sell, lease or control the property. A land trust offers greater privacy with regard to the ownership of the property and may be appropriate when a parent or individual wants to leave a life estate (i.e. the right to live in the house for one's lifetime) to one person, but future ownership of the property to another.
  6. PROPERTY OWNED IN A TRUST
    Property can also be held in a trust. The trustee will own the property for the benefit of another. While it is possible to be both the trustee and beneficiary of a living trust, such an arrangement is not recommended if the beneficiary is receiving government benefits. The state will perceive the ownership to be the same as sole ownership and will place a lien on the property for payment of past services upon the death of the beneficiary or in the event the beneficiary is no longer able to reside in the home. Ownership and control of property by trusts is discussed more fully above.
  7. PROPERTY HELD BY SEVERAL OWNERS
    The two most common forms of shared ownership are condominiums and cooperatives.
    Condominiums, or "condos" as they are frequently referred to, are a means of shared ownership where the individual owner has both an individual ownership of his or her own unit as well as common ownership of the common areas of the home/building. While most people tend to think of condos as individual apartments within one large building, a condo could be individual ownership of one's bedroom in an individual home with shared ownership in the common areas such as the hallway, bath, kitchen, living and dining rooms. Such an arrangement can be very practical if a person with a disability wishes to share their home with one or two roommates.
    Note that this option may need approval of government agencies to meet zoning requirements for multiple residents, because it may no longer be a "single family" residence. There is also a potential problem for resale and financing and the legal fees, surveying, cost of zoning charges could be very high.
    Cooperative Housing, is another shared housing arrangement which carries a few more risks than condominiums. Cooperative housing units can include interest in townhouses, individual apartments within a large apartment building or individual bedrooms in a single family home. Each of the co-op members owns stock in the cooperative and has the right to live in a single unit. Each co-op member pays a proportional share of the maintenance, taxes, mortgage payments, etc. Agreement must be reached among co-op members as to what repairs are to be made. Co-op members also have approval rights of all new co-op members. This is both an advantage and a weakness. The individual co-op member who wishes to sell can only sell his or her share to an approved new co-op owner. Another drawback is that if one co-op member does not pay his or her share of the mortgage, taxes or maintenance, the other members will be responsible for the delinquent owner's share. This is a major distinction between co-operative housing and condominiums. In a condo, if an owner doesn't pay his or her mortgage, the bank can only foreclose on the delinquent owner's unit - not the entire building. Despite the risk, living in cooperative housing is a viable and somewhat popular option for persons with disabilities.
APPENDIX A
STATE LAWS, FEDERAL LAWS AND COURT DECISIONS AFFECTING HOME OWNERSHIP AND CONTROL

On the Federal level, the three major laws that have prohibited discrimination against persons with disabilities are the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and the Fair Housing Amendments Act of 1988. Section 504 concerns itself with the right of all persons with disabilities to participate fully in community life. Section 504 prohibits discrimination against persons by any agency, organization or program receiving federal financial assistance. This includes all federal housing programs (HUD programs) that are designed to assist persons who are low income to rent or purchase a home of their own. The HUD regulations were written to comply with Section 504 and require that persons who are disabled are not discriminated against in obtaining access to low cost housing.
SECTION 504 CASE LAW
There have been a number of legal challenges to specific housing authority procedures and regulations based upon the protection and rights as defined in Section 504 and the FHAA. The following cases have successfully resolved issues regarding tenant disputes and have challenged restrictive zoning and health and safety rules.

  1. In Cason v. Rochester Hous. Auth., No. Civ-90-0250L (W.D.N.Y. Aug. 6, 1990)(Clearinghouse No. 45,739), the court held that the use of the "independent living" standard violated both the FHAA and Section 504. The Public Housing Authority in Rochester, New York was found to violate Section 504 when it rejected three applicants with disabilities because the Authority determined that the applicants were incapable of living independently. The applicants, who were physically disabled, required the assistance of personal care attendants.
  2. In Citywide Associates v. Penfield, No. 89-SP-9147-S(Mass. Trial Ct.Housing Ct., Hampden Div. Apr.21, 1989), a landlord attempted to evict a tenant who had a history of mental illness for violating her lease. The tenant's rent was subsidized through a Section 8 voucher. The tenant heard voices and in order to quiet the noises banged on the walls with a broomstick and threw water at the walls causing property damage. The landlord refused to allow the tenant to stay even though she agreed to enter an outpatient treatment program. The court held that the tenant was protected by Section 504 and that the proposed accommodation of counseling was reasonable. The court looked at the great harm that would come to the tenant if she were evicted and became homeless and ordered the landlord to allow her to stay in the apartment while receiving counseling.
  3. In Worcester Hous. Auth. v. Santis, No. 89-SP-0471(Mass.Trial Ct., Housing Ct.,Worcester County,Dec.5, 1989), the tenant had physical disabilities and was often unable to admit support service providers to her apartment. The housing authority argued that it did not have sufficient staff available to admit the service providers when the tenant could not. The court ruled that the housing authority had failed to reasonably accommodate the tenant's handicapping condition and therefore refused to order the eviction.
FAIR HOUSING AMENDMENTS ACT OF 1988 CASE LAW
While Section 504 has been used to protect the rights of persons receiving HUD assistance, there was historically little that could be done to protect persons with disabilities from the prejudice of hostile neighbors, fearful landlords or paternalistic legislators who sought to "protect" persons with disabilities by controlling their housing options for them. Not only were there the usual problems of availability of support services and affordable housing, but also the unfounded fears and prejudice from the community as a whole. This largely changed with the Fair Housing Amendments Act (FHAA) of 1988.
The rights of persons with disabilities have been strengthened by this powerful piece of legislation. The Fair Housing Act has been further strengthened by the passage of the ADA, as the language of the ADA has been used by the courts to help interpret ambiguous language in the FHAA resulting in increased victory for persons with disabilities. The FHAA is more effective as a shield against prejudice because it applies to all landlords, lending institutions and all persons in the community — not just parties receiving federal funds.
The FHAA has three major purposes. It purports to end segregation of the housing available to persons with disabilities, to give persons with disabilities the right to choose where to live and the right to reasonable accommodation to their handicapping condition in obtaining housing. As echoed in the opening pages of this manual, the FHAA makes it clear that persons with disabilities have the same rights as do persons who are non disabled — they cannot be denied the right to buy or rent a home on the basis of their disability.
One of the strengths of the FHAA is the fact that an individual does not have to prove that a landlord or regulation intends to discriminate. He or she only has to prove that the challenged housing practice has a discriminatory effect on him or her as a person with a disability. The law is extremely broad and even protects persons with disabilities from private actions on the part of their neighbors which interfere with their enjoyment of their home.

The following cases were decided based on the FHAA:

  1. In United States v. Scott, 788 F.Supp. 1555 (D.Kan. 1992), the district court found that a neighbors' actions of threatening to sue their neighbor if he sold his home to an organization that wanted to open a group home violated the FHAA "interference" prohibition.
  2. In Richmond, Virginia, the court held in People Helpers Foundation, Inc. v. City of Richmond, 781 F.Supp. 1132 (E.D. Va. 1992) that neighbors who made derogatory comments and who made frequent unfounded complaints about tenants with disabilities to the police department violated the civil rights of the tenants. At issue was whether or not the actions of the neighbors amounted to coercion, intimidation, threats or interference as protected by Section 3617 of the FHAA. The court held that a threat need not involve violence to be actionable under the Act.
As a result of both Scott and People Helpers, it is clear that private citizens who improperly use the courts or the police department to harass persons with disabilities can be sued for their actions. As a result of the FHAA, individuals and service providers have been successful in challenging zoning laws and health and safety restrictions that have the effect of limiting a person's choice as to where he or she lives. One way that communities have blocked the development of community residences has been to require a space requirement in their zoning laws. A zoning law may require, for example, that group homes for persons with disabilities be at least one mile apart from each other. These spacing rules were found to be invalid by the court in Horizon House Developmental Services, Inc. v. Township of Upper Southampton, 804 F.Supp. 683 (E.D.Pa. 1992). The court held that in imposing the spacing requirement against Horizon House, the city violated the reasonable accommodation provision of the FHAA. The court stated that such a spacing restriction was invalid because it imposed a quota on the number of people with disabilities who could live in a community rather than allowing them to live where they chose to live.
The FHAA has also succeeded in reducing the number of procedural burdens a city may impose on persons with disabilities. The court held in Easter Seal Society of New Jersey, Inc. v. Township of North Bergen, 798 F.Supp. 228 (D.N.J. 1992), that certain notice and public hearing requirements as well as a requirement that a conditional use permit be obtained created a discriminatory impact and that the requirements were therefore invalid.
Communities have often made it more difficult for persons with disabilities to live in community based housing due to fire and safety code restrictions. It is not unusual for a town to require that persons with disabilities be protected by requiring their homes to have whole house sprinkler systems, fire retardant wall and floor coverings, lighted exit signs above all doors, fire extinguishers on the walls, etc. These fire and safety regulations were found to violate the FHAA because they made it more difficult for persons with disabilities to live in the community of their choice. The City of Stow appealed the ruling of the court but the Sixth Circuit Court supported the lower court and held that zoning ordinances are invalid if they treat people with disabilities differently from others or from biological families (Marbrunak v. City of Stow, No. 90-925, slip op. at 22 (N.D.Ohio 1991). The court stated that a city could have fire and safety regulations but that the regulations had to be individually tailored to reflect the specific needs of the persons in question rather that assuming that all persons with developmental disabilities are at greater risk from fires than other persons.
Regulations that limit the number of people who may live together have also been struck down as violating the FHAA. These rules were held to violate the FHAA because they should be waived or modified to meet the reasonable accommodation requirement of the FHAA. (Parish of Jefferson v. Allied Health Care, Inc., 1991 U.S.Dis. E.D. La. 1992). The FHAA states that discrimination occurs when a zoning board "refuses to make reasonable accommodations in rules, policies, practices or services when such accommodations may be necessary to afford such person equal opportunity to use and enjoy the dwelling." 42 U.S.C. Section 3604(f)(3)(B).
While the majority of cases filed under the FHAA have upheld the right of persons with disabilities to have the same basic rights to housing as persons who are not disabled, two cases have upheld restrictive zoning limitations. In Elliot v. City of Athens, 960 F.2d 975 (11th Cir. 1992) the court upheld a zoning ordinance permitting a maximum of four unrelated individuals to occupy a residence in a single-family residential zone. The Elliot court relied on a balancing test in which it balanced the interests of people with disabilities against the city's interest in maintaining the residential character of a particular neighborhood. In U.S. v. City of Edmonds, slip op. (W.D.Wash. 1992), the district court followed the Elliot decision.
These two cases demonstrate the need for attorneys who are representing persons with disabilities to present factual evidence of the disparate impact such a regulation has on persons with disabilities. Neither Edmonds nor Elliot courts considered the discriminatory impact which has been argued in civil rights cases involving race or gender discrimination. The Elliot decision may have been decided differently had the attorneys argued that while the zoning rule appears to be neutral, its effects are discriminatory because persons with disabilities will suffer more than persons who are not disabled by being denied the right to live in the community. Attorneys also need to educate judges about the impact community living has on the self esteem and enjoyment of life of a person with a disability. It is important to build into each case the factual information available as to how persons who are developmentally disabled are positively affected by the opportunity to live in homes of their own choosing within the community.

REVIEW OF ILLINOIS LAWS AND COURT DECISIONS
An important Illinois law which facilitates community integrated living for persons with disabilities is Article 3 of the Illinois Human Rights Act, which provides that it is a civil rights violation to engage in "unlawful discrimination" on the basis of a person's "handicap" with respect to "real estate transactions". 775 ILCS 5/101 et. se

Q. (1993). "Handicap" is defined as a determinable physical or mental characteristic, the history of such characteristic, or the perception of such characteristic by the person complained against, which may result from disease, injury, congenital condition of birth or functional disorder and which characteristic . . . for purposes of Article 3, is unrelated to the person's ability to acquire, rent or maintain a housing accommodation. 775 ILCS 5/1-103(I) (1993).
Actions which are prohibited and constitute a civil rights violation include the following:

  1. refusing to engage in or negotiate for real estate transactions or discriminating in making available such a transaction;
  2. altering the terms or conditions of a real estate transaction or in the furnishing of facilities or services in connection therewith;
  3. refusing to receive or failing to transmit a bona fide offer with respect to a real estate transaction;
  4. misrepresenting to a person that real property is not available or failing to bring a property listing to his or her attention or refusing to permit him or her to inspect such property;
  5. printing, publishing or otherwise advertising or making a record or inquiry in connection with a prospective real estate transaction expressing any limitation founded upon or indicating an attempt to engage in unlawful discrimination;
  6. action with respect to listing of real property with knowledge that unlawful discretion is intended. 775 ILCS 5/3-102.1 (1993).
  7. refusal to permit reasonable modifications of existing premises at the expense of someone with a handicap necessary to afford such person full enjoyment of the premises (provided that certain conditions may be imposed with respect to assurance of workman-like construction, obtaining building permits, a return of the structure to its existing conditions, and security for the same);
  8. refusal to make reasonable accommodations in rules, policies, practices or services as may be needed to afford a person with a handicap equal opportunity to use and enjoy a dwelling; and
  9. failure to incorporate certain design and construction features to accommodate persons with handicaps in covered multi-family dwellings for occupancy after March 13, 1994. 775 ILCS 5/3-102.1 (C) (1993).
The Act notes that it does not require dwellings be made available to an individual who would constitute a direct threat to the health or safety of others or cause substantial physical damage to the property of others. 775 ILCS 5/3-102.1 (K) (1993). The Act also provides that "blockbusting" activities are civil rights violations and include:
  1. solicitation with respect to real estate on the grounds of loss of value due to present or prospective entry of persons with handicaps;
  2. distribution of statements designed to induce the sale or lease of property because of present or prospective changes in residents with handicaps; or
  3. intentionally creating alarm in order to induce a person to sell or lease property because of present or prospective entry of persons with a handicap. 775 ILCS 5/3-103 (1993).
With respect to zoning, the Illinois zoning statute grants municipal authorities the power to classify, regulate and restrict the use of property on the basis of "family relationship". "Family relationship" is defined as one or more persons each related to the other by blood, marriage or adoption and maintaining a common household. 65 ILCS 5/11-13-1 (1993). However, Section 5/11-11.1-1 gives municipalities the authority to enact ordinances prescribing fair housing practices, defining unfair housing practices, establishing fair housing or human relations commissions and prohibiting discrimination based on the handicap of a person in connection with residential real estate. Section 5/11-11.1-1 goes on to state that any ordinance or standard enacted under the authority of the section or under general home rule power and any commission standard, rule, or regulation which prohibits, restricts, narrows or limits the housing choice of any person is unenforceable and void.
The case law in Illinois, or perhaps the lack thereof, does seem to indicate likely success for persons wishing to establish or maintain community integrated living arrangements for persons with disabilities. In City of Evanston v. Ridgeview House, Inc., et al. 64 Ill. 2d 40, 349 N.E.2d 399 (1976), the City of Evanston brought an action against the operator of a sheltered care home facility seeking to stop it from housing persons with mental retardation or mental disorders. The city argued that caring for persons with mental retardation or mental disorders in the community placed a burden on other residents. The Illinois Supreme Court upheld the trial court's finding that Ridgeview House, Inc. had not violated the conditions of the ordinance/special use permit because the evidence did not sufficiently establish that the residents were a burden to other residents or the neighborhood. The Court also found that the fact that Ridgeview House provided some personal care to some residents and employed licensed nurses did not necessarily mean that the facility was a nursing home.
In The United States of America v. the City of Chicago Heights and RFMS, Inc. v. The City of Chicago Heights, Civil Action No. 89 C 4981 filed in the United States District Court for the Northern District of Illinois in 1989, both the government of the United States and RFMS, Inc., a corporation in the business of developing residential facilities for adults with mental retardation, sued the City of Chicago Heights for its refusal to issue a special use permit to construct a group home for 15 adults with mental retardation. The action alleged that the City of Chicago Heights violated Section 804(f) of the FHAA, 42 U.S.C. Section 3604 (f). The lawsuit did not proceed to a final judgment by the court, but rather the parties entered into a settlement or consent decree. Pursuant to the terms of the consent decree, the City was ordered to grant RFMS a special use permit and RFMS was to provide the City with an agreement that operation, use and ownership of the facility would remain as originally proposed. The consent decree further stopped the City from: unjustifiably withholding or interfering, based upon the handicap of prospective residents, with efforts of RFMS to obtain any permit or license; making unavailable or denying a dwelling to any buyer or renter because of a handicap of that buyer or renter, person residing and/or intending to reside in the dwelling, or person associated with that buyer or renter; and from failing or refusing to consider, because of handicap, any application for special use permit for the construction, in any residential zoning district of a residential facility intended to house 5 or more persons with handicaps, on the same basis as any of the permitted or special uses enumerated in the City's zoning code. Additionally, the City was required to provide certain reporting with respect to proposals, submissions and other zoning matters and to pay $30,000 to RFMS and $15,000 into an escrow account.
In Michael K. and Terry R. v. Village of Swansea, Case No. 86-5343 (S.D.Ill) suit was filed against the Village of Swansea, which suit was amended after the FHAA was passed, on the basis of Swansea's local code which contained an ordinance prohibiting more than three unrelated persons from living together. The dispute was settled and although the specific terms are confidential, the Village has amended its code to permit group homes and, in fact, a group home was permitted to be constructed.

The foregoing cases, and perhaps in particular the fact that they have not proceeded to judgment, suggest a trend toward increasing success for those seeking to establish and maintain independent or supported living arrangements for persons with disabilities within residential communities in the State of Illinois.
REVIEW OF MISSOURI LAWS AND COURT DECISIONS

One of the principle Missouri laws which facilitates community integrated living for persons with developmental disabilities is Section 213.040 of the Missouri Human Rights Act which prohibits discrimination in housing practices on the basis of an individual's "handicap", defined as a physical or mental impairment which substantially limits one or more of a person's major life activities, a condition perceived as such, or a record of having such an impairment, which with or without reasonable accommodation does not interfere with . . . occupying the dwelling in question. V.A.M.S. Section 213.010 et. se

Q. (1993).
Prohibited practices include:

  1. the refusal to sell or rent or to negotiate for the same;
  2. discriminating in the terms or conditions of sale or rental;
  3. to represent to any person because of a handicap that a dwelling is not available to inspect, sell or rent when it is in fact so available;
  4. publication or advertising with respect to sale or rental which indicates any preference, limitation or discrimination based on handicap;
  5. discrimination in providing services or facilities in connection with the dwelling, based on the handicap of that buyer or renter, a person residing in or intending to reside in the dwelling, or of any person associated with the buyer or renter;
  6. refusal to permit necessary reasonable modifications of existing premises at the expense of the renter with a "handicap", provided he or she agrees to restore the premises, refusal to make reasonable accommodations in rules, policies, practices or services as may be needed to afford such person equal opportunity to use and enjoy a dwelling; or
  7. failure to incorporate certain design and construction features to accommodate handicapped persons in covered multi-family dwellings for occupancy after March 13, 1991. (The Missouri Human Rights Act is known as V.A.M.S. Section 213.040-2 (1993)).
The Missouri Human Rights Act does not limit any law that requires dwellings to be designed and constructed in a manner that affords persons with disabilities even greater access than that required by the Missouri Human Rights Act. The Missouri Human Rights Act does not require a dwelling be made available to an individual who would cause a direct threat to the health or safety of other individuals or substantial physical damage to the property of others, nor does it limit the applicability of any reasonable government restriction regarding the maximum number of occupants permitted to occupy a dwelling. V.A.M.S. Section 213.040-6 and -7 (1993). There is an exemption Act for sale or rental by a private individual owner who meets certain conditions (provided, however, that discriminatory advertising is still prohibited) and for rooms and units in certain dwellings containing independent living quarters. Section 213.045 of the Act prohibits discrimination in commercial real estate loans. The Act also creates the Missouri Commission on Human Rights to encourage fair treatment for and discourage discrimination against persons with handicaps. V.A.M.S. Section 213.020 (1993).
Two primary obstacles to the establishment and maintenance of group homes within the community are zoning regulations and restrictive covenants which restrict permissible uses to single family dwellings or residences, or similar language where opponents then contend that a group home does not constitute a single family dwelling or residence. Section 89.020 (2) of the Missouri Zoning and Planning Act effectively eliminates this problem with respect to zoning. V.A.M.S. Section 89.020 (2) (1993). It provides that for the purpose of any zoning regulation, the classification "single family dwelling" or "single family residence" shall include any home in which up to eight unrelated persons who are mentally or physically handicapped reside, and may include two additional persons acting as house parents or guardians who need not be related to each other or any of the persons with handicaps so residing in the home. Group homes qualify as single family dwellings or residences regardless of whether the zoning ordinance in question was enacted prior to or after 1985, the date of the enactment of Section 89.020. The statute does permit local zoning authorities to require that the exterior appearance of group homes and property be in reasonable conformance with the general neighborhood standards and also permits zoning authorities to establish reasonable standards regarding the density of such individual group homes in any specific single family dwelling neighborhood. Nevertheless, it appears clear that, in Missouri, zoning regulations cannot be used to prohibit group homes for persons with disabilities within single family dwelling neighborhoods.
Restrictive covenants are typically found in the subdivision context and much like governmental zoning regulations, govern matters pertaining to the structures, use and appearance of residences in the subdivision. As with zoning ordinances, restrictive covenants may purport to limit structures or uses to single family dwellings, residences or the like. Section 89.020 (3) of the Missouri Zoning and Planning Act addresses such subdivision restrictive covenants as well as other private contracts by prohibiting any person or entity from entering into a contract which would restrict group homes or their location, as defined in Section 89.020, from and after September 28, 1985.
In London vs. Handicapped Facilities Board of St. Charles County, et al., 637 S.W. 2d 212 (Mo. App. 1982), a case decided prior to the enactment of Section 89.020, the court determined that the restrictive covenant at issue permitting only detached single family dwellings but which did not define "family" was intended to refer to persons related by blood, marriage or adoption. The London Court found that the covenant, therefore, did not allow the county to open a group home for persons who were disabled. It is interesting to note, however, that the Court stated that the complaining adjacent land owner was not entitled to prohibit the county from opening a group home. The county, as a government body, was instead required to pay the neighboring land owner compensation for the "taking" of a property right, that being an easement in the land used by the county for a group home.
After the London decision, and the enactment of Section 89.020, the Missouri Supreme Court decided the case of Blevins vs. Barry-Lawrence County Association for Retarded Citizens 107 S.W. 2d 407 (Mo. Banc 1986) involving a subdivision restrictive covenant that property could be used for residential purposes only and that no buildings were permitted other than single or double family dwellings. The Blevins Court, noting that restrictive covenants are not favored in the law, found that the group home in question (run by a non-profit organization and designed to allow adults with mental retardation to live in a residential setting with "house parents") fell within the definition of "residential purposes" as opposed to being a commercial use. The Court also found that the use of the property as a group home did not violate the second sentence of the restrictive covenant which regulated "buildings", finding that the restriction applied only to structures and not to the use of the property. The Blevins Court stated that where a restrictive covenant does not define "family", courts are reluctant to restrict the definition to persons who are related by blood, marriage or adoption. Because the Blevins Court determined that the group home did not violate the covenant, it did not decide the question of whether the covenant violated Section 89.020 or whether 89.020, in fact, applied retroactively to the preexisting restrictive covenant.
The court in Maull vs. Community Living for the Handicapped, Inc. 813 S.W. 2d (Mo.App. 1991) similarly construed a subdivision covenant restricting land use to single family residential purposes and dwellings and found that a planned residential group home for young adults with mental retardation, which would have the external appearance of a large single-family residence, did not violate the restrictive covenant.
The following Missouri regulations impact housing for persons who are disabled:
  1. V.A.M.S. Section 630.200 (1993) prohibits residential facilities, day programs or specialized services operated, funded or licensed by the Department of Public Health from denying admission or other service to a person because of handicap.
  2. Section 209.190 of the Aid to the Blind - Rights of Persons with Visual, Hearing or Physical Disabilities Act, V.A.M.S. Section 209.010 et. se

    Q. (1993) provides that persons with physical disabilities are entitled to full and equal access to all housing accommodations offered for rent, lease, or compensation, subject to the conditions and limitations established by law and applicable alike to all persons.

  3. Section 209.190 does not require the person renting, leasing or providing accommodation to modify his property to provide a higher degree of care for the person with a physical disability than for someone who is not so disabled.
  4. Section 209.190 permits service dogs for persons with a physical disability and provides that such persons shall not be required to pay extra rent or compensation for such dog but shall be responsible to pay any damages done to the premises by such dog.
  5. V.A.M.S. Section 630.115 (1993) sets forth rights of individuals under the care of the Department of Mental Health and includes the right to humane care and treatment, safe and sanitary housing, to be treated with dignity as a human being, and to be evaluated, treated or habilitated in the least restrictive environment.
Persons with disabilities, their families and advocates must recognize that discrimination still exists. Whether the discriminatory action is caused by landlords, public officials or by private individuals, persons with disabilities have rights. As there are more cases filed and more precedents set, the struggle to obtain one's basic right to live in the community will be easier. Until then, knowledge of your rights is critical and advocates need to better inform persons with disabilities and their families of their right to rent or purchase a home of their choice regardless of the prejudices or misguided protection of landlords or bureaucrats.

APPENDIX B

FREQUENTLY USED ESTATE PLANNING TERMS
Beneficiary
The person who receives the "benefits" of a Will, Trust, Life Insurance Policy, certain Employee Benefits and the like.
Codicil
An amendment to a will which changes a portion of the will. A codicil must be signed and witnessed according to the same rules as the will.
Guardian
A person appointed by the court to assist a disabled person (or a minor) with his or her finances and/or personal decisions.
Estate
All of a person's assets minus all of one's debts at the time of death.
Estate Tax
Under federal law, taxes are generally due on estates over $600,000. With proper estate tax planning, a married couple can avoid paying taxes on a combined estate of up to $1.2 million dollars.
Executor
The person who is responsible for carrying out the directions contained in a will. The executor usually works with an attorney to "probate" (see below) the estate with the court.
Heir
A person who inherits property under state law.
Inter vivos Trust
A "living trust" — one which exists; comes into being during the lifetime of the Grantor or Settlor (i.e. the maker of the trust).
Intestacy Laws
Laws of a state which dictate how your estate will be distributed if you die without a will.
Irrevocable Trust
A trust that cannot be changed by the maker of the trust once it has been executed. This type of trust is often used to avoid estate taxes because funds placed in the trust are generally not included in the maker's estate.
Probate
A legal court procedure in which the assets of a deceased person are passed to beneficiaries under the provisions of a will or, if there is no will, under the state laws of intestacy.
Remainderman
The person(s) who will receive the remainder of a trust after the current beneficiary has died.
Revocable Trust
A trust which can be revoked or amended during the life of the Grantor or according to the provisions included in the Trust Document. A revocable trust is included in the estate of the Grantor at the time of his or her death for purposes of determining estate taxes due, if any.
Special Needs Trust
A trust used to provide supplemental care; care that is over and above what the beneficiary is able to obtain through his or her own earnings and/or through government benefits. A properly worded Special Needs Trust will not jeopardize government benefits which may, in fact, be more valuable than an inheritance.
Successor Executor
The person who assumes the duties of Executor if the named executor is unwilling or unable to perform his or her duties.
Successor Guardian
The person who assumes the duty to handle finances and/or make decisions for a minor or disabled person if the present guardian dies or is unable or unwilling to perform his or her duties.
Testamentary Trust
A Trust which goes into effect only upon the death of the Testator (the person making a will containing a trust). The trust will go into effect after the estate is probated, which on average takes between six (6) months and two (2) years.
APPENDIX C
CASE EXAMPLES

Example 1: This example provides information on how three men who have developmental disabilities were able to purchase a home of their own.
The men, who are between the ages of 25-31, worked with their families to obtain subsidized loans to purchase a home. All three lived with their families at the time and they were close friends for several years. All three receive SSI and have jobs which provide additional income to them. In addition, the three were eligible for CILA funds through a local service provider. All three had guardians of the persons at the time they initiated living together in a home of their own.
Once the men identified a home, they were able to obtain a mortgage for $40,000 from a local bank. This amount was derived from the combined incomes of each person of approximately $650 each. In addition they received a 2nd mortgage from a federal housing program available to first time buyers who are low income. This brought the total available to $70,000. Because the purchase price of the home was $107,000, each of the three sets of parents contributed $12,000 towards the purchase price of the home.
The home is owned by the three men. Because the three men were under a guardianship, they did not have the capacity to sign the loan papers for a mortgage. Their parents, as guardians, signed the loan documents as did each of the three men. As guardians, the parents are not personally liable for the loan but are merely signing on behalf of their respective ward. In order to protect the guardians from being personally liable a court order had to be obtained authorizing them to sign the mortgage documents.
A set amount of money is set aside each month into an escrow account for repairs. Each person owns a 1/3 share of the home. If anyone leaves, their share can be sold to another person with a developmental disability.

Example 2: This is another example of how three men with developmental disabilities were able to move into a home which was owned by one of the three men.
The men, who were all 23 years old had attended the same residential school together. They were close friends and all three aged out of their public school funded, private school placement at the same time. The men all have physical challenges as well as have developmental disabilities.
The parents of one of the three men owned a large home (5 bedrooms) which was fully wheelchair accessible. The parents who owned the home created a special needs trust and gifted their home to the trust. Their son was named the beneficiary of the trust. His trustee then signed a rental contract with the other two men to live in the home. Neither of the two renters had a guardian but it was recommended that each name an agent under a legal power of attorney for property to co-sign the rental agreement. This was recommended to protect the trust in the event one of the two men violated the terms of the rental agreement and later claimed he did not have the legal capacity to sign the lease.
The three men are eligible for SSI, medicaid, food stamps, fuel assistance and a CILA grant from the Illinois Department of Mental Health and Developmental Disabilities. The CILA grant pays the salary of a couple who have moved into the home and assist the men in decision making and caring for their home. In addition, medicaid pays for a personal care attendant who assists the men with their personal needs.
It was recommended to the parents of the two men who are renting from the trust that they establish a special needs trust for their sons. All three parents are supplementing the care of their adult children through gifts and personal services. If the parents of the two men who are renting space in the home also establish a special needs trust, their children should be able to continue to receive the same supports they now receive from their parents from the trust assets after their parents are gone.

Example 3: This example provides information of how a Section 8 subsidy enables a young woman who is developmentally disabled to live in her own apartment. The young woman works part time at a nearby grocery store. She also is eligible for SSI, medicaid and food stamps. The woman's parents assisted her in applying for a Section 8 voucher from the Illinois Housing Authority. They also assisted her in applying for medicaid and food stamps and in applying for her job. She visits her family often but enjoys the independence of living separately from her parents. With minimal assistance from her mother and sister, she is able to budget her income on a monthly basis and handles all of her own finances. Upon her mother's death, she will continue to need minimal supervision in the area of money management. She is able to shop, clean her home, and schedule her own doctor's appointments when needed to, independently.
The young woman participates as a volunteer staff person in a special recreation program sponsored by the local Park District. She has not made friends at work yet nor has she yet become close to her neighbors. However, between her volunteer work, babysitting for her nieces and nephews and needlepoint, she states that she is happy and not lonesome living alone. This young woman does not receive any assistance from the state agency serving persons with developmental disabilities but does receive some state vocational and rehabilitation services. Her parents recently created a special needs trust which will protect their daughter's share of the inheritance they plan to leave for their three children. The parents are the trustees of the trust during their lifetimes and have named their other two children as successor trustees upon their deaths. The siblings know that they are to use the money to provide an advocate for their sister, if needed, and to provide financial assistance when necessary.

Example 4: This example concerns a man in his early thirties who recently received CSLA funds. These funds have enabled the man to move into his own apartment and hire individuals to assist him with developing the skills he needs to live alone. He located and rented this apartment with the assistance of his mother who is his legal guardian of the person only. She is also his representative payee for his SSI check. A representative payee avoids the need for a guardianship of the estate. In addition to CSLA and SSI money, he receives medicaid and food stamps.
His mother reports that since living alone he has become much more capable of caring for his own needs. He is now able to wash his clothes, clean his home, and cook for himself. He still requires some assistance with making a grocery list and shopping. He has also not yet mastered the ability to handle his own money. His mother reports that he has received years of training in money management. She believes this is an area where he will always need assistance. He uses CSLA funds to hire a person to assist him in the areas where he still requires assistance such as in housekeeping, shopping and budgeting. CSLA funds were also used to pay a person to teach him how to use public transportation. He has an excellent sense of direction and he has become quite skilled in taking buses when he needs to get somewhere if he is not able to get a ride from his mother or a friend.
One of the areas that his mother is most concerned about is the area of friends and leisure activities. He does volunteer work for two community non-profit programs in the area. However he has yet to meet a close friend. His mother has used CSLA money to pay a person to be his companion/friend. She reports that this has been disappointing due to the fact that her son has a severe speech impairment and has difficulty communicating with others. She is concerned about his social life, or lack thereof, and feels that this is the one area he is truly lacking in at this time.
For the most part, however, she and her son are very pleased with his ability to live on his own. She says that thanks to the CSLA funds he now has choices about where he lives and has a say in hiring people to help him in the areas he still needs assistance.

APPENDIX D
SELECTED BIBLIOGRAPHY

Abravanel, Evelyn Ginsberg Discretionary Support Trusts, 68 Iowa L. Rev. 273 (1983).
Apfel, Jerome B. Estate, Personal Planning for Mentally Disabled, v6 The National Law Journal 15 (February 20, 1984).
Beckwith, Edward J. Planning For the Aged and Disabled, C502 ALI-ABA 1297 (April 23, 1990).
Bergstrom, Richard J. Special Needs Trusts: Financial and Estate Planning for the Disabled; How to Structure an Estate Plan That Won't Jeopardize a Disabled Child's Eligibility for Public Assistance, v172 Journal of Accountancy 52(5) (July 1991).
Bogin, Matthew B. Group Homes for Persons With Handicaps: Recent Developments in the Law (Symposium: Disabilities Law), v5 Western New England Law Review 423 (Wntr 1983).
Bourey, Jeanette M. The Irrational Relationship of Mental Retardation to Zoning Objectives (Case Note), v19 John Marshall Law Review 469 (Wntr 1986).
Chamberlain, Darcy J. Estate Planning for Families with Disabled Children, v75 Illinois Bar Journal 612 (July 1987).
Champine, Martha Using Discretionary Trusts to Benefit Disabled Persons, v69 University of Detroit Mercy Law Review 581 (Summer 1992).
Collins, Barbara J. Overview of Medicaid for the Aged, Blind and Disabled, 209 PLI/Est. 161 (Feb. 6-7, 1992).
Cook, Timothy Homeward Bound Court Strikes Blow to State-Supported Segregated Services for Disabled Persons, v11 Mental and Physical Disability Law Reporter 358 (Sept-Oct. 1987).
Cyr, Renee, Milstein, Bonnie, and Rubenstein, Leonard, The Americans with Disabilities Act: A Breathtaking Promise for People with Mental Disabilities, v24 Clearinhouse Review 1240 (March 1991).
Danzig, Aaron L. Are Medicaid Trusts Trustworthy, v203 New York Law Journal pl. col. 6 (March 6, 1990).
Dawson, Deborah I. and Goldman, Daniel E. Advocating Alone for the Developmentally Disabled, 59 col. in. v131 New Jersey Law Journal 6 (May 11, 1992).
Deford, Gill Medicaid Liens, Recoveries, and Transfer of Assets After TEFRA, v18 Clearinghouse Review 134 (June 1984).
Developments in Mental Disability Law - 1990, v24 Clearinghouse Review 959 (Jan. 1991).
Fatoullah, Ellice Medicaid Home Care For the Elderly and Persons With Disabilities, il v26 Clearinghouse Review 882 (Dec. 1986).
Frank, Alan L. and Goldberg, Ilene V., Estate Planning to Meet the Special Needs of a Severely Disabled Child, v16 Estate Planning 232 (July-August 1989).
Hardin, Jane Disability Advocacy Projects: Programs That Assist Low-income Clients and Ease State Government Fiscal Problems, v26 Clearinghouse Review 776 (Nov. 1992).
Jordan, Raymond, Jr. and Owens, Rodney J., Estate Planning for Parents of Mentally Disabled Children, v126 Trusts & Estates 41 (Sept. 1987).
Kotkin, Minna J. The Fair Housing Amendments Act of 1988: New Strategies for New Procedures, v17 New York University Review of Law & Social Change 755 (Oct. 1989).
Lee, Jacqueline Suburb Sued for Unfair Zoning; Justice Department, Group Homes Using New Law for Disabled (Chicago Heights), il v75 ABA Journal 40 (Sept. 1989).
Levy, Richard E. Social Security Claimants with Developmental Disabilities: Problems of Policy and Practice (Symposium), v39 University of Kansas Law Review 529 (Spring 1991).
Longenecker, Ruth R. Planning For Medicaid Eligibility, v15 Tax Management Estates, Gifts, and Trusts Journal 131 (July-August 1990).
Lorenzo, Laura A. Societal Prejudice Reflected in Our Courts: The Unfavorable Treatment of the Mentally Retarded, v2 Seton Hall Constitutional Law Journal 771-803 (Spring 1992).
Milstein, Bonnie, Pepper, Beth and Rubenstein, Leonard S., Fair Housing Amendments Act of 1988: What It Means For People with Mental Disabilities, v23 Clearinghouse Review 128 (June 1989).
Miolla, Raymond L. Jr., Estate Planning for the Handicapped or Disabled, v26 New Hampshire Bar Journal 297 (Summer 1985).
Mitchell, Brent A. Medicaid Planning For the Elderly: Using Supplemental Discretionary Trusts to Pay the Costs of Long-term Care, v31 Washburn Law Journal 80 (Fall 1991).
Mooney, Carol Ann Discretionary Trusts: An Estate Plan to Supplement Public Assistance for Disabled Persons, v25 Arizona Law Review 949 (Fall 1983).
Paulsrud, Eric D. The Least Restrictive Alternative: A Theory of Justice for the Mentally Retarded, v10 University of Arkansas at Little Rock Law Journal 465 (Summer 1987).
Peluso, Stephen Protecting and Managing the Property of Persons with Mental Retardation, 5 Conn. Prob. L.J. 125 (1989).
Pepper, Beth Highlights in Fair Housing Law: Strengthening the Rights of People with Disabilities to Live in the Community of Their Choice, v26 Clearinghouse Review 1458 (March 1993).
Ransom, Richard A. How the Americans with Disabilities Act Affects Residential Community Associations, v9 The Practical Real Estate Lawyer 55 (May 1993).
Roberto, Elizabeth Can the Mentally Retarded Enjoy "Yards That Are Wide?", v28 Wayne Law Review 1349 (Spring 1982).
Rose-Ackerman, Susan Mental Retardation and Society: The Ethics and Politics of Normalization, v93 Ethics 81 (Oct. 1982).
Ross, Sterling L. Jr., The Special Needs Trust and Its Use in Estate Planning For Families with Disabled Children, 172 PLI/est 239 (October 1, 1986).
Rubenstein Reskin, Lauren Parents Must Support Disabled Adult Children, v71 ABA Journal 133 (Nov. 1985).
Russell, Mark L. Alternatives, A Family Guide to Legal and Financial Planning for the Disabled, First Publications, Evanston, Illinois 1983.
Russell, Mark L. Grant, Arnold, Joseph, Suzanne, Fee, Richard W., Planning for the Future, American Publishing Company, Evanston, IL, 1993.
Seng, Michael P. Discrimination Against Families With Children and Handicapped Persons Under the 1988 Amendments to the Fair Housing Act, v22 John Marshall Law Review 541 (Spring 1989).
Simmons, F. Bruce III, Estate Planning for the Disabled Child: Options Available After Kreitzer Style Decisions, v7 Estates and Trusts Quarterly 367 (June 1986).
Simpson, Jim Law for the Intellectually Handicapped: A Continuing Unmet Need, v9 Legal Service Bulletin 220 (Oct. 1984).
Simring, Richard B. The Impact of Federal Antidiscrimination Laws on Housing for People with Mental Disabilities, v59 George Washington Law Review 413 (Jan. 1991).
Support Services and Alternatives to Guardianship (directory), v12 Mental and Physical Disability Law Reporter 202 (March-April 1988).
Spain, Richard C., Estate Planning for a Disabled Beneficiary, The Practical Lawyer, Vol. 37-No. 7, October 1991.
Turnbull, III, H. Rutherford, et. al., Disability and the Family: A Guide to Decisions for Adulthood. Paul Brooks, Baltimore, MD 1988.
David P. Vandagriff, Love Thy Neighbor: Group Homes in Single-Family Neighborhoods, v42 Journal of the Missouri Bar 251 (June 1986).
Varnet, Theresa M., "Future Financial Planning" The Exceptional Parent, pages 32-35, Nov/Dec 1988.
Joel S. Welber, Special Considerations for Special People; Estate Planning for Families with a Developmentally Disabled Child, il v63 Michigan Bar Journal 1163 (Dec. 1984).
Richard J. Wirth, Clearing the Way for Handicapped Individuals in Common Interest Communities, v21 Real Estate Law Journal Fall 152 (Fall 1992).
Michael Allan Wolf, EZ's HUD Looks To a Brighter Future (Housing Law, Policy and Finance, part 1), v44 Consumer Finance Law Quarterly Report 233 (Fall 1990).
Zartman, James N., Discretionary Trusts for Disabled Beneficiaries, Vol. 81 IL Bar Journal, October 1993.

APPENDIX E
ADDITIONAL RESOURCES

For additional information, contact the following organizations:

APPENDIX F
	ANNUAL BUDGET FOR THREE INDIVIDUALS WITH SEVERE DISABILITIES LIVING IN A SHARED APARTMENT


EXPENSES (Total to be divided by 3)		INCOME (per individual)
	Per Year	
HOUSING		
	Rent	$14,400	$5,352 ($446/month SSI)
	Insurance	$90	$0
	Heat	$600	$0
	Maintenance	$1,800	$0
	Telephone	$240	$0
	Electricity	$660	$0
		
CONSUMABLES		
	Food	$4,500	$1,380 (Food Stamps)
	Non-Food Supplies	$900	$0
	Clothing	$3,000	$0
	Hygiene Supplies	$360	$0
	Recreation/Leisure	$2,160	$0
		
TRANSPORTATION		
	Vehicle	$6,000	   $516 (Paratransit for elderly and disabled)
	Fuel	$1,600	
	Insurance	$1,400	
 
		
STAFFING		
	Direct Care and Support Staff	$76,920	$7,248 (Total income per person)
	FICA & Benefits (21%)	$16,153	$41,741 (Amount needed from trust or other State/federal programs)
	Administrative Overhead (.07%)	$5,384	
		
ADVOCATE/PEER COMPANION	$10,800	
		
TOTAL YEARLY BUDGET	$146,967	
		
Per Person	$48,989	$48,989

Revised: July 18, 2002.