We will be reprinting abstracts and presentations from the 9th World Down Syndrome Congress. In July we reprinted: Maths is For Everyone - Count Us In! What is this thing called numeracy? by Rhonda Faragher. Following is her Plenary Lecture abstract originally published in the Down Syndrome Quarterly, 2006 8(1):48, and presented at the 9th World Down Syndrome Congress, Vancouver, BC. Aug. 25, 2006. Numeracy for Life. Mathematics can be a difficult subject to teach and to learn. And yet, new approaches to mathematics education can make it accessible (and fun!) for all and especially for people with Down syndrome. Concepts from a broad range of areas of mathematics when applied in life contexts form the basis of numeracy. Opportunities to develop numeracy throughout our life are important for our on-going quality of life. This presentation will consider what is involved in a range of topics will be included, such as: geometry, measurement, probability, time, money and number. Early Childhood Special Education Least Restrictive Environment (LRE) Guidance Paper September, 2005 Reprinted with the permission of Pam Reising Rechner, (217) 524-4835, E-Mail: preising@isbe.net. Early childhood, birth-5, is a critical period in the life of every child. During this period, the foundation is laid for all later development and learning, including critical skills and dispositions for academic learning, for relating to others, and for becoming positive contributors to peer groups, families, and communities. Children develop these skills through active participation with their peers, their families, and their communities, in contexts that include but are not limited to home, preschool, child care, Head Start, play groups, libraries, parks, and places of worship. All young children, including those who have disabilities, are dependent upon the experiences and opportunities available within these everyday contexts as they build a solid foundation for development and learning. All young children who are in early care and education, including those who have disabilities, have the right to experience settings, relationships and interactions that will support and further their development and learning.		Young children with disabilities have both the need and the right to participate in and benefit from the same experiences as their peers without disabilities, including access to the same everyday contexts and opportunities for development and learning. Families of young children without disabilities have many options for the education and care of their children. Families of children with disabilities must have these same options, and should also receive any support and assistance that enable them and their children to take advantage of, and be active participants in, these same contexts. Access to least restrictive environments: expands options for services and supports allows families to live a more typical life promotes community acceptance for children with disabilities provides opportunities for children to gain knowledge and skills that are useful in typical early childhood activities and daily routines insures that children with and without disabilities or other special needs have the opportunity to interact with and establish friendships with one another prepares children to live successfully within their communities and society The Least Restrictive Environment in Early Childhood A "least restrictive environment," as outlined in the Individuals with Disabilities Education Act (IDEA) and its accompanying federal and state rules, regulations and policy, requires that children with disabilities, aged 3-21, be educated with children who do not have disabilities. For school-age children, the least restrictive environment is typically the regular classroom. Applying the requirement of least restrictive environment to early childhood programs for 3-5 year olds is less clear because public school programs currently begin with Kindergarten, at age 5.
			moonlight is the newsletter of the Riverbend Down Syndrome Association. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

In early childhood, "least restrictive" is often referred to as "inclusive." In early childhood, inclusive environments:

• are designed primarily for children without disabilities or special needs
• are part of the array of services available to all children in the community
• would be selected by the family if their child did not have a disability
• are suited to the child developmentally and chronologically
• are based on an appropriate early childhood curriculum using age-appropriate activities
• are individually planned to meet the unique needs of child and family, as identified in partnership with family
• are staffed by supportive, qualified educators and caregivers
• receive supports, services, and consultation from qualified early childhood special educators and ancillary personnel to insure successful inclusion
• may be provided in collaboration with non-public school community programs

Services for preschool aged children with disabilities can and should be delivered through a variety of types of programs including those available through public school early childhood programs and publicly funded universal preschool programs, as well as through collaboration with Head Start and community preschools. In Illinois, these environments include public and private child care and Head Start programs, as well as any school-based preschool programs available to all children. Inclusion means that children with disabilities have the right to participate in the same settings that are available to other children of their age, and to participate in a general education curriculum appropriate for all preschool children.

Services and supports in an inclusive environment encourage opportunities for the development of relationships with children without disabilities, and provide typically developing children with opportunities for positive interactions and relationships with peers with disabilities.

An inclusive environment is one that provides all children, including those with disabilities, with access to the general education curriculum. In early childhood, the curriculum is compatible with the characteristics and learning needs and interests of young children, and provided within the context of activities appropriate for young children.

Inclusive environments are not services or settings:

• chosen for administrative convenience
• chosen for personnel convenience
• chosen for budgetary reasons
• where only children with disabilities or other special needs are served
• chosen without informed family input and approval
• that place unreasonable demands on families
• without appropriate adaptations and supports
• where caregivers are not supportive and qualified

The provision of special education services is, by definition, a partnership: between providers and families, different providers within and across entities, and different entities with different relationships with and different responsibilities for meeting the needs of children and families. Public schools are responsible for the provision of special education and related services, irrespective of the setting in which the child is served. Because children develop and learn through participation in typical, developmentally and age appropriate activities and routines, the most beneficial collaborative models are those in which all personnel work together on behalf of all children in the program, school, or learning environment.

Collaboration:

• insures that parents have a choice of high quality setting options that are useful and reasonable for meeting their own needs and their goals for their children
• insures shared responsibility for the IEP
• results in adaptations and accommodations that insure the child's access to the learning activities and environments available to children without disabilities
• insures that the individual needs of the child are met within the inclusive environment
• is flexible and matched to the responsibilities and characteristics of the inclusive setting and its staff

The Illinois State Board of Education and the public schools of Illinois are responsible for implementing the provisions of the IDEA. At the preschool level, "least restrictive environments" include all environments that are available to children without disabilities. For young children with disabilities, intervention services provided, irrespective of setting, are individualized services that directly address the child's individual developmental and learning goals. It is the mandated responsibility of each child's local public school to ensure that options for the location of services represent the full range of options available to all children, and that individualized services are provided within those settings.

It is the responsibility of each public school and district to:

• insure that high-quality inclusive options are available to families
• establish partnerships with families in order to determine services and settings that best meet their child's and their family's needs
• cultivate and establish partnerships with high quality community settings
• work with community settings to establish clear roles and responsibilities with respect to meeting the needs of the child and family, including those on the IEP
• insure staffing patterns, support and training that enable staff to support children's development and learning within the context of everyday early childhood activities and routines

It is the responsibility of the Illinois State Board of Education to:

• establish partnerships with other state, regional, and federal agencies and entities with oversight over programs that serve as potential inclusive settings
• recognize and promote placements in the least restrictive environment
• assist districts in exploring and implementing staffing and funding options that support collaboration and the provision of education in the LRE
• insure availability of training opportunities for public school, community, and other early childhood staff in models and skills to provide high quality inclusive education, development, and related services
• insure each child's right to a free, appropriate public education provided in the least restrictive environment

Public schools, districts, and the Illinois State Board of Education hold the ultimate responsibility for insuring that the needs of children with disabilities are addressed within environments most likely to result in their being able to participate in the school and in the community as productive citizens.

Local Events

• Learning from and with Families: Strategies for Using Family Members as Instructional Partners
• Using Assistive Technology
• An Introduction to ACC features and strategies
• SIUE Parent Workshop
• Strategies and Techniques that Support Students with Communication Disabilities in the Inclusive Classroom.

Future Planning

This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.

What is the Ticket and how does it work?

Ticket to Work is an underutilized but potentially useful Social Security Administration program designed to assist people with disabilities who want to work. It allows Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicaid and Medicare recipients to prepare for and begin to work without losing those benefits. One reason this is possible is because you can deduct certain expenses before calculating your 'countable income.' Remember that your eligibility for ongoing disability income benefits depends in part on whether your countable income exceeds the 2005 Sustained Gainful Activity (SGA) threshold of $830/month or $1,380/month if you are blind. Last issue, we discussed Impairment-Related Work Expenses (IWRE) which can be deductive to lower your countable income. In this issue, we will discuss continued payment under a vocational rehabilitation program, continuation of Medicare coverage, Medicare for people with disabilities who work, and continued Medicaid eligibility.

What happens to my SSI or SSDI benefit payments if my impairment improves?

If there is medical evidence which substantiates that your impairment has improved to the extent that you no longer meet the SSA's definition of 'disabled,' your SSI and/or SSDI benefits should cease. However, under the Ticket to Work you can continue to receive either or both of these benefits if and as long as you participate in a vocational rehabilitation program. To qualify for this exception:

• You must be participating in an approved vocational program before your disability ended according to SSA definition and
• The SSA must decide that your continued participation in the vocational rehabilitation program would increase the likelihood of permanent removal from the disability rolls.

What happens to my Medicare coverage if I earn too much money?

If you are under 65 but have a disabling impairment, you have been eligible for Medicare because you received SSDI income. If your disabling impairment continues, but you begin to work and perform SGA, your SSDI payments may cease. In this case, as long as your impairment has not improved medically, you may continue to receive hospital and medical insurance coverage through Medicare for at least 93 months as long as you have previously satisfied the Medicare waiting period.

Once your premium-free Medicare coverage ends, you may continue to buy Medicare coverage as long as you remain medically disabled. You may purchase both hospital insurance (Part A) and Supplemental medical insurance (Part B). if you have low income and limited resources, you may qualify for premium assistance. For specific premium figures, please contact the Center for Medicare and Medicaid Services online at www.medicare.gov or by phone at 1-800-MEDICARE.

What happens to my Medicaid coverage if I ear too much money?

If you have been eligible for SSI and Medicaid and your cease to receive SSI income benefits because you work and perform SGA, you may continue to receive Medicaid insurance coverage if

• You had been eligible for SSI for at least one month
• Your disabling impairment continues
• Your countable assets continue to fall below the SSI/Medicaid threshold ($2000)
• You need Medicaid in order to work and
• Your gross earned income falls below the 'threshold amount' needed to replace SSI, Medicaid and other publicly funded attendant care

Each state has its own threshold level, which are subject to change. Please consult your local benefits planner, Medicaid office or financial advisor for current state-by-state thresholds. If your earnings exceed the basic threshold for your state, you may still be eligible for an individual threshold if you have

• Impairment-related work expenses
• Blind work expenses
• A Plan for achieving Self-Support (PASS)
• Publicly funded attendant or personal care or
• Medical expenses above your state's per capita amount.

What happens to my Medicaid if I earn too much money and accumulate too many resources?

If your income is above the SGA level AND your countable assets are more than $2000 but less than $10,000, you may be eligible for Medicaid buy-in. There are no asset limitations to qualify for Medicare.

9^th World Down Syndrome Congress

Each person with Down syndrome is unique and wonderful, and needs to be seen for their strengths, potential and individuality.

Individuals with Down syndrome have a huge potential, and a great desire to learn and to be included. They arrive at school and community activities so excited, eager and hopeful, but so often things fall apart.

Many factors can interfere with their learning and their life. What is happening within an environment may have a huge effect on the individual with Down syndrome. When we include individuals with Down syndrome in their neighbourhood schools, and community we must always consider the impact that the classroom, school or community environment might be having upon them. In observing we need to remember that an individual can be impacted by the people factor, by the physical environment itself and by the functional factors.

1. Health Issues – vary from individual to individual. If there are any changes, concerns, the first thing to do is ask the family to take the person to a doctor who can check on possible health issues that may be impacting upon the individual and their life.
   There can be many, and it can be complex, but some of the more common ones are:
   • Hearing and visual impairments
   • Gross and Fine Motor skill delays — hypotonia, affects fine and gross motor activities. Fatigue easily.
   • Cognitive delays — weak generalization, don't learn by osmosis, don't teach anything you have to unteach, don't assume they understand.
   • Memory and attention difficulties — don't assume they remember, think every day is a new day.
   • Sensory issues — can become worse when fatigued or anxious.
   • Dual/triple diagnosis
   • Sleep Apnea
   • Mental Health issues — Stress, Anger, Anxiety, Depression, Obsessive Compulsive, Grooves, Self Talk
   • Puberty, family issues, the challenges of life itself
   • Sexuality

1. Understanding that they are visual learners. Use Visual Communication systems.
2. Understanding that they need time to process information, to think, to respond.
3. Understanding that individuals with Down syndrome have great difficulty with communication.

   Communication is more than speech. Communication involves understanding and comprehension, involves their use and understanding of expressive language and of the pragmatic skills.

   They want to communicate, but need our help in providing them with the tools and time needed to be successful.

4. Understanding that "All behaviour is related communication."

   All Behaviour has a Communicative Intent. An individual who cannot communicate uses behaviour as a way to tell us something. Our job is to observe what happens before a behaviour begins and to figure out what the individual is trying to tell us. If we don't figure out this "puzzle" the first time, we have then reinforced a behaviour.

   Through his behaviour an individual is trying to communicate to us that "something" or several "somethings" are causing him difficulty.

   The cause of behaviour is related to communication difficulties. The remedy to improve behaviour is to improve communication. The method to improve communication is to use visual communication supports to aid and support the communication.

   —Linda Hodgdon
   http://www.usevisualstrategies.com
5. Understanding that individuals with Down syndrome may have difficulty with all transitions.
6. Looking at the whole person, see them as a person first. Capitalize on their strengths, their individualities, their interests and how they learn.
7. Having expectations, expecting them to continue to learn. Continued teaching especially of literacy skills, speech, language and communication skills throughout the lifespan.
8. Chunking or task analysis of material to be learned.
9. Giving choice, choice, choice ... can't say it enough!
10. Encouraging as many interactions in a day as possible, and trying to encourage the interactions with their peers, not adults.
11. Encouraging independence, especially from adults. Support, facilitate and teach interdependence with peers.
    • use visual communication aides, schedules etc. /social stories
    • cueing from a distance, by peers,
    • communication book to be done by child themselves or with peers
Think: If a peer or the individual can do this, why am I doing it?
12. Educating and using peers to help understand and support the individual.
13. Direct and continued teaching of social and friendship skills. Most individuals with Down syndrome do not understand the "social" world. Many behaviours result from their desire to belong, to participate and to have friends. They can be so lonely. These students do not learn by "osmosis." We have to do direct teaching and facilitating of the social and friendship skills, in the same way as we would for the cognitive and physical skills.
14. Adapting and modifying the material. Material needs to be at the right level for the student for learning to be successful.
15. Ensuring success, many, many large and small successes in a day, acknowledged in a visual manner.
16. Practice, practice and practice to "over learning" or until it becomes automatic. Use a variety of multi-sensory, tactile, materials to aid learning.
17. Respecting parents as professionals about their children.

Down Syndrome Articles

Introduction

Children and young people with Down syndrome and their parents are faced with a multitude of health-related problems. This frequently involves one particular topic, nutrition, being viewed from a professional rather than a parental point of view, which can lead to substantial long-term health problems and risks.

The weight gain in children with Down syndrome below the age of 3 is less than satisfactory or moderate at best. A multitude of reasons are given for this, for example:

• The raised incidence of cardiac abnormalities in DS children, especially the increasingly common AV canal
• Abnormalities and deformities of the gastro-intestinal tract, e.g. Hirschsprung's disease, pancreas anulare
• Orofacial dysfunctions
• Muscular hypotony

This problem means that the feeding and nutrition for these children is often done in a way that includes, for example, more meals, energy-supplemented nutrition, or even formula feeding and a special diet.

This leads more than a few patients and their parents to fixate on nutrition as a problem that everyday life must revolve around.

A large number of test subjects show a BMI progression that crosses the percentiles after the age of 3. Possible causes for this include:

• Maintenance of a higher-calorie diet, e.g. including following reconstructive surgery
• Resolution of orofacial problems and the related disruption of feeding and drinking
• Insufficient exercise
• Development of undesirable nutritional behavior with a preference for certain foods or food groups

These weight and activity problems worsen as children grow older, and possible causes for this include:

• Parental influence over the child decreases
• Facilities including special schools, residential schools, workshops, residential communities etc. do not focus enough on nutrition, nutritional behavior and exercise

Data

This retrospective study covers a group of 25 children with Down syndrome, 12 females and 13 males. We have been seeing these children on an advisory basis once or twice a year since they were 1, as part of our surgeries focusing on Down syndrome.

We have not noted a general increase in BMI of this kind in children and young people who we see regularly, and by that I mean at least once every 3 months. This may be because nutrition and exercise is a central theme of every consultation.

The following data is included:

• Anthropometric data, height, weight, and BMI
• Food plans over 3-7 days (specified precisely in grams) that are evaluated by a computer-aided nutritional analysis program (PRODI 5)
• An investigation of the activity index calculated as an average value over 4 weeks
• A laboratory check (clinical) at the time of the relevant consultation
• An exercise protocol over 4 weeks*

Activity Index (AI)*

We found it necessary to define an activity index (AI) ourselves, as we could not find a suitable method in the sports-medicine related literature available to us or on enquiry at the relevant facilities.

Our activity index (AI) is defined on the one hand by the number of weekly units, and on the other by the actual time. Only units under and over 30 minutes are included.

Results

1. There is no significant difference between females and males.
2. BMI progression over the age of 12

Discussion

The nutritional pattern and problems of children and young people with Down syndrome requires close inspection, analysis and, if necessary, early intervention. The first priority should be diet problems involving difficulties with drinking and eating, frequently in connection with moderate or even poor growth levels in young patients. This often also correlates with a range of additional functional disorders such as cardiac and gastro-intestinal abnormalities or orofacial dysfunctions, but also with disruption to the interaction between mother and child. This problem can also resolve itself during infancy, however, in that the quantity of food intake is no longer an issue, but this still frequently results in an inadequate intake of energy. This leads in turn to a BMI that rises steadily as the years go by.

Parents have to be alerted to this problem, and ongoing training is necessary. The advice that we provide during our annual consultations with these patients has not proved to be effective enough. Close monitoring and professional advice that focuses on weight progression and nutritional patterns appears to be necessary. Facilities that look after children and young people with Down syndrome also need to focus on this problem.

The nutritional pattern is also the result of a learning process, which means it can be modified and corrected. It is therefore important to aim for the best standard of nutrition possible, particularly from the point of view of preventing nutrition-related illnesses. Generally recognized nutritional concepts such as those from the DGE can be used as guidelines for this.

Children and young people with Down syndrome should also be encouraged to participate in sporting activities. Down syndrome in itself does not exclude sporting activities, although attention should of course be paid to specific problems such as cardiac genesis. Endurance sports like walking and cycling etc. are ideal, with around 3 sessions of at least 30 minutes every week. Encouraging young people with Down syndrome, who tend to prefer more passive leisure pursuits, to take part in sporting activity like this requires a high level of motivation from their carers.

We have been collecting data on nutritional patterns in people with Down syndrome since June 2004. You are most welcome to help with collecting this data. More information is available on our home page at www.kinderarzt-bretten.de

Web Wanderings

All Kids Health Insurance is a new health insurance plan for all uninsured children under eighteen in our state and it will begin July 1, 2006. This insurance will be especially helpful to families of children with special needs who are now uninsured or who may lose insurance coverage in the future due to changes in parent's employment. All Kids provides comprehensive healthcare coverage to all children in Illinois covering:

• Doctors visits
• Vision & Dental benefits
• Hospital services
• Prescription Drugs
• Mental Health Services

Children can go to almost any hospital or pharmacy in Illinois, as well as community health centers or health departments. Families will choose a primary care physician who they will see for regular doctor visits and for referrals.

For questions about health care and health insurance for children with special needs, including questions about All Kids, contact Faye Manaster, Director of the Family-to-Family Health Information & Education Center, 1 (866) 931-1110 or E-mail: FamilytoFamily@TheArcofIL.org