Our group meets on the first Friday of every month at 6:30 p.m. at Saint Anthony's Wellness Center in the Alton Square Mall. For driving directions call the Wellness Center at 462-2222. This issue feature the testimonies of Dr. Wrobbel, SIUE professor and member of our support group; Sheila Hebein, NADS Executive Director; and Tony Paulauski, Arc of Illinois Executive Director, regarding the proposed Early Intervention changes. Please voice your opposition to The Honorable George Ryan, Office of the Governor, 207 State House, Springfield, IL 62706 (217) 782-0244, TDD: (217) 558-2239, Fax: (217) 524-4049, E-Mail: governor@state.il.us. Send public comment to Secretary Linda Reneé Baker, Department of Human Services, Bureau of Early Intervention, 623 East Adams, 2nd floor, Springfield, IL 62794. (217) 557-1601, E-mail: dhsei06@dhs.state.il.us. Regional Events May 23rd. 9:00 a.m. - 12:00 p.m. What is the big IDEA? Individuals with Disabilities. Spend a free training session learning about special education rights under IDEA '97 with Chris Wasik of Family T.I.E.S. Chris is a 1995 Partners in Policymaking graduate and has served on the Access Services board of directors and currently serves on the Executive Committee of Family Support and received the Family of the Year from IL-TASH. Network. Location: IMPACT, Inc., 2735 East Broadway, Alton, IL 62002. . Parent travel stipend available upon request. For more information call Family T.I.E.S. Network at 1 (800) 865-7842, E-mail: ftiesn@aol.com, or Missy Kichline, IMPACT, E-mail: staff@IMPACTCIL.ORG.

June 30th 8:30 a.m. - 5:00 p.m. Down Syndrome Guild of Greater Kansas City Summer Conference, Take Another Look... At Down Syndrome. Keynote Speakers: Martha Beck, Dr. Len Leshin and Dr. Peter K. Rogan. Martha Beck is the author of Expecting Adam. Dr. Leshin is a Texas pediatrician and Internet personality who has a son, Avi, with Down syndrome. Dr. Rogan, is Associate Professor of Pediatrics, Section of Medical Genetics and Molecular Medicine, at Children's Mercy Hospital and Clinics. He will present on the Current Status of Genetic Studies of the Down Syndrome Critical Region of Chromosome 21. Location: Westin Crown Center Hotel. Pre-Registration fee: $20 with a $10 rebate Crown Center Food Court coupon. Late registration fee: $25 (no coupon). Free babysitting will be provided. Conference features 2 series of workshops - one for parents and professionals, one for teens and young adults with Down syndrome. The parent/professional series of workshops will feature: Developing your IEP's Inclusion in the System by Linda Donahoo; Learning Reading by Pat Oelwein; Learning Math by Pat Oelwein; Childhood Behavior by Dr. David Richman; Behavior Transitions (0-10 years) Becky White and Sarah Walters; Transitions (14-21 years) by Cynthia Thomas; Speech Development by James D. MacDonald; Nutrition by Dr. Karen Seitz; Sexuality by Sally Helvy; Medical Update by Dr.Len Leshin; Employment by Johnson County Developmental Supports Adult Living Options by Johnson County Developmental Supports; Estate Planning for Families with Special Needs by Stanley Burnstein. The Teen/Adult Series of Workshops will feature: Accessible Arts Workshop by Tina Blatter; Self Determination by Sadie Hunter & Mia Peterson. For more information contact Courtney Holmes, Executive Director for the Down Syndrome Guild of Greater Kansas City, 8340 Mission Road, Suite B4; Prairie Village, KS 66206, (913) 642-8048; Fax: (913) 642-2431; Email: cholmes@alsa-midwest.org or kcdsg@bigfoot.com. moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175. Editor: Victor Bishop Web Site: http://www.riverbendds.org/

Good afternoon. Thank you for giving me the opportunity to speak with you today. My name is Dr. Duff Wrobbel, and I am a professor here at Southern Illinois University Edwardsville. I could easily spend 3 hours discussing this document, so limiting my comments to 3 minutes presents me with quite a challenge. I used this report just recently in one of my classes as the basis for a lecture on flawed reasoning, so I've decided to use my time here today to share with you what I shared with my students. I'd also like to include a little math lesson. Before I do so though, I'd like to ask the members of the panel if they know my daughter's name? No? How about her diagnosis? Well, for the record, her name is Holland, she is beautiful, and she has Down syndrome. The well-trained team of therapists who work with her regularly could have all answered these questions, so I fail to understand how DHS can justify so radically altering the service plan that my wife and I have carefully developed with our service providers?
Let's call this document what it really is. This is simply "Managed Care meets DHS". Since our collective experience with managed care is such that the Congress is actually having to develop laws to protect us from it, I find it absurd that right-minded people would develop a plan based on such a model and expect us to believe that this will improve services. All this does reduce critical services to the people who need them most. This is the one and only benefit of this plan. Let's be honest, folks. The emperor is naked.
Now let me first tell you what I explained to my freshmen class just last week. There is something that we in the social sciences call the "myth of the mean." Simply stated, this means that when you create a statistical average from any population, this number can be extremely useful when discussing the group as a whole. However, you can never reason from this mean score back to any individual in that population because that is simply not what mean scores are for. If, for example, half of the people in this room had incomes of $25,000.00 a year, and the other half had incomes of $250,000.00 a year, then our average incomes would each be $137,500.00 a year. However, not one person in this room would actually earn $137,500.00 a year. In fact, this figure would be more than 5 times greater than half our incomes, and about half the size of everyone else's. So if you then used our average income to determined what our little community needed by way of services or could afford in terms of taxes, not a single person in this room would be getting what they needed or paying what they could afford. Doesn't this sound absurd? So why is it any less absurd that right here on page 11 you've created an equally non-existed statistically average child with Down syndrome and then adjusted my daughter's service levels to this statistical mean? This is simply bad math. I have twenty-seven 19 year olds who now understand this perfectly. I sincerely hope that you do too.
Now for your math lesson. Consider that each Quality Review Team is to meet for one half day, or 4 hours per week, and includes 6 participants. Thus, it takes 6 x 4 hours = 24 total work hours to conduct one meeting. Allowing even minimal time for associated paperwork, let's call it 25 hours. There are 44 Review teams meeting each week, so 25 hours x 44 meetings is 1100 work hours per week. If there are 50 work weeks in a year, then implementing this proposal requires at least 55,000 additional hours of work in any given year. This is enough work to keep one person working full-time for 27.5 years, yet not a single hour of this work is with a disabled child, or with the family member of a disabled child. This is not Early Intervention. This is meetings. My child does not benefit from meetings, she benefits from intervention.
Next, assume that the parent on each Quality Review Team is a volunteer, but that the CFC Service Coordinator's time is worth $15.00/hour, the CFC Supervisor and both therapists' time are each worth $25.00/hour, and the physician's time is worth $75.00/hour. I think these are certainly reasonable, if not downright modest figures. This would make each hour of each meeting worth $165.00. This, times the aforementioned 55,000 hours of annual meetings called for by this proposal, would cost in excess of 9 million dollars ($9,075,000.00). This does not include the second tier of review meetings, nor any of the other costs associated with this proposal. Can you document that there are more than 9 million dollars worth of abuses in the current system, and that this plan will eradicate them? If not, then this is a foolish waste of time and money.
Thank you for your time.

National Association for Down Syndrome Early Intervention Guidelines Testimony by M. Sheila Hebein, Executive Director, E-mail: shebein@nads.org

The National Association for Down Syndrome has been providing services to hundreds of families of children with Down syndrome in the Chicago metropolitan area since 1961 and we are very concerned about some aspects of the new guidelines for Early Intervention (2-28-01.)
As I indicated in my testimony on January 29, 2001, I realize that reasonable guidelines were sorely lacking in the Early Intervention System, but I was shocked to read the proposed new guidelines as they pertain to specific groups of children.
I don't believe the amount of therapies should be allocated by diagnosis, but by individual need - otherwise we are regressing!
First of all, we should not be categorizing children by their diagnosis. Gone are the days when children with Down syndrome are viewed as a group - or at least I thought that was the case. Each child, whether they have Down syndrome, Cerebral Palsy, PDD or Spina Bifida, needs to be viewed as an individual and not as a syndrome. Some children with Down syndrome will need many therapies per month as is true with children with other conditions. One child with Down syndrome may require ten therapies per month and a child with Cerebral Palsy may only require 6 sessions and vice versa. I urge you to abandon the "Condition-Specific Guidelines."

Individual Family Support Plans
Surely those most familiar with the child and family, i.e. qualified staff, therapists and physicians, as well as the parents are in the best position to determine each child's needs. If there are disagreements between those working directly with the family and the Quality Review Team, a fair, system to resolve the differences must be developed. Until an agreement is reached, the IFSP that is in place should remain in effect until all parties agree to a resolution.

Use Of Private Insurance
I testified in January that we are opposed to the utilization of private health insurance for Early Intervention Services. Many of our families have experienced discrimination by their insurance companies. Some of our children have been denied basic healthcare coverage because of their Down syndrome diagnosis. There is serious concern that if Early Intervention Programs and therapists start billing for these services, it will reinforce the insurance companies' position that children with Down syndrome "cost more" and, therefore, more companies will deny them even basic healthcare coverage. Considering that approximately 50% of infants born with down syndrome have congenital heart defects, many of which require open heart surgery during the first year of life, inability to obtain basic healthcare would make them and their families extremely vulnerable. In addition, many of our children have other serious medical problems and absolutely need their healthcare insurance to cover these costs, many of which are astronomical. I urge the department of human services to not put our children at risk in this way.

Family Fees
In addition to the medical conditions that require hospitalization, many of our children require medical care, such as very frequent doctor visits and medications, which families have to pay for out of pocket. Therefore, family fees for Early Intervention Services would just add to the financial burden that our families have to deal with. Again, we urge the State of Illinois to do the right thing and meet the needs of our most vulnerable children who surely deserve a child friendly system that will enable their parents to do everything they can, with the support of the State of Illinois, to prepare them to live full productive lives in the community.

Personal Perspective
As the parent of a 28 year old son with Down syndrome who had access to Early Intervention (yes in 1973) I believe my family's experience is a resounding testament to the value of accessible, family friendly early intervention services.
When my son, Christopher graduated from Park School in Evanston in 1993, Rotary International in Evanston immediately hired him as a Mail Clerk. He has been extremely successful in his job. He works 40 hours per week and he gets to work on public transportation. He has three weeks paid vacation, health and life insurance and other employee benefits. He has never had a job coach and does not cost the state of Illinois a penny, nor has he for many, many years. In fact, he paid close to $3,000 in taxes in the year 2000. I believe that the money spent on Chris early in his life has paid off. The state invested in Chris early and he is an integral part of our community, a voting citizen and someone in whom we can all take pride.
I urge the Department of Human Services to give our infants and toddlers the same opportunity that Christopher had almost thirty years ago - surely we must move forward in this brand new century!

Early Intervention & Early Start Rules 2001 by Tony Paulauski , E-mail: TonyPaulauski@aol.com, The Arc of Illinois - Today March 16, 2001. URL: http://www.thearcofil.org. Reprint permission granted by the author.

The Department is now moving forward with Family Fees and the use of private health insurance for both Early Intervention and Early Start Services. This is troublesome for all of us. There have been many meetings on these important programs but little agreement or compromise on how to fund and support infants and toddlers who can benefit from Early Intervention.
Here is my testimony given at the hearing on rules last week:

Let me state very clearly, our vision for Early Intervention is very simple: All children in, no one out.
The Arc of Illinois would like to submit the following testimony on the Proposed Rules for Early Intervention and Early Start. We appreciate the opportunity to submit these comments and the good work of Secretary Baker and her staff on disability issues. We have all worked hard on the behalf of children and families. I appreciate Secretary Baker's interest and the attention she has paid to Early Intervention services in Illinois.
The Arc of Illinois does not support the proposed change in the definition for eligibility for Early Intervention services and creation of the Early Start Program. One Early Intervention System serving all infants and toddlers is the preferred system for Illinois.
I believe that, just maybe, Illinois is finally enrolling the proper number of infants and toddlers in its Early Intervention Program at 12,000 or possibly more. I view it as a positive measure that the program is growing by leaps and bounds. This is good news for Illinois families. In my readings on other states I find that according to the U.S. Dept. of Education Office of Special Education, in their report on the "Number of Infants and Toddlers Receiving Early Intervention Services as of 12/1/98," California has 19,421 enrolled infants and toddlers in their Part C Program; Florida has 11,783; Michigan has 5,918; New York has 20,592; Pennsylvania has 7,385 and Texas has 12,877. Maybe we are finally on our way to a comprehensive Early Intervention System in Illinois. Yes, I know the tremendous growth in the Early Intervention budget in recent years, and that is an investment we all know is paying off.
This year's proposed State Budget calls for expenditures of $50 billion. The debate about sending $100 or $120 million for Early Intervention pales in the context of the outcomes for infants and toddlers enrolled in Early Intervention. If we cannot continue to invest in children with developmental delays or "children at risk," who can we support? In my opinion, this is a program that we should continually be asking the questions: Are we spending enough? Are we serving all the children we can?
Why are we now proposing to limit Early Intervention services by rule when we have experts who can and should prescribe the services that the child and the family need? It is good to monitor the provision of services. This has been lacking in Illinois.
It is important to have expert guidelines on the amount of therapies and supports certain developmental delays will benefit from. We have no such guidelines that I know of in Illinois.
It is extremely important that service coordination be managed by free standing service coordination organizations, so that the conflict of referring Early Intervention participants to one's own services is eliminated. Self referral is common and a conflict of interest.
It is important that other sources of income, beyond general revenue, are captured for Early Intervention. We are now beginning to bring in additional income thanks to Secretary Baker and her staff. This effort should be continued aggressively. These are the areas we should concentrate our efforts on to build a comprehensive Early Intervention System in Illinois.
We at The Arc of Illinois maintain the position that the desired system in Illinois is one system for the provision of Early Intervention Part C as an entitlement to families. Everyone in. Nobody out.

Comments On Proposed Rules For Early Intervention Part 500

1. Eligible level of delay must remain at 30%, not the proposed 50%.
2. The definition of "at risk of substantial developmental delay" is entirely too restrictive. As Appendix 1, I have attached Rhode Island's eligibility for Early Intervention Services and their definition for "Children at Risk for Developmental Delays or Disorders."
3. Services for children "at risk" should be funded under Federal Part C.
4. Regional Intake Entities and current Child and Family Connections Agencies should be independent of providing Early Intervention services. Currently, you can provide Early Intervention services and perform service coordination. This is a conflict of interest.
5. Service coordinators should maintain a caseload of no more than 1:40.
6. Monitoring of providers of Early Intervention services needs to be instituted and increased. This is especially true of the for- profit individual provider.
7. We are opposed to the charging of Family's Fees for the provision of Early Intervention services.
8. We are opposed to the use of the families' private insurance for the provision of Early Intervention services.
9. Rates for Early Intervention services must cover actual cost. Current rates are inadequate and long standing providers are now considering dropping out of the Early Intervention system because of inadequate rates.
10. Parents should be immediately permitted to inspect and review any records relating to their children. The 45 day limit is not acceptable.

Concerns About Proposed Early Start Rule 502
If the Early Start program is adopted, and we oppose its adoption, we offer the following comments on the proposed rule.

1. We understand that the change in eligibility from a 30% delay to a 50% delay will result in one half of the infants being moved from Early Intervention to the Early Start Program. This amounts to about 6,000 families. Who is working with the families these changes will affect?
2. Infants now entitled to Early Intervention Services will lose that entitlement and federal due process protections. Early Start needs a mediation process at the very least so parents have options such as mediation when disagreements occur over their child's development.
3. It is possible that a waiting list may result for Early Start if financial resources are limited.
4. While Early Intervention Part C entitles families to 16 different services, Early Start is limited to just 6 services. Important services not covered in Early Start are vision, audiology, social work, service coordination and transportation. At the very least, these additional five services need to be added to the menu of Early Start service.
5. There is no statement in the proposed rules on when Early Start services will begin. We recommend service implementation begin within at least 45 days.
6. There is no statement in the proposed rule that Early Start services should be provided to the maximum extent appropriate in natural environments.
7. Families will be mandated to utilize their private insurance for Early Start Services and no protections have been instituted to protect their lifetime insurance caps on their private insurance. The Department should introduce legislation exempting Early Start and Early Intervention from lifetime caps for private health insurance.
8. Families will be required to pay fees for Early Start.
9. Families with private insurance will have to pay both co-payments for insurance and family fees. This rule should allow co- payments to be considered as part of the family fee.
10. Current rates for Early Intervention Services are not covering the cost of Early Intervention Services. When will Early Intervention rates be changed to cover actual cost?
11. Early Start should reimburse for travel.
12. Early Start should reimburse for Social Work services.
13. Early Start should reimburse for audiology services.
14. Early Start should reimburse for service coordination.
15. Early Start should reimburse for vision services.
16. Many Early Intervention providers have no experience in billing private insurance for Early Intervention Services.
17. A Two Tiered System will probably have more administrative costs associated with it.
18. A Two Tiered System is more confusing to families whose infants could benefit from Early Intervention Services.
19. It is possible that the proposed changes for Early Intervention are in conflict with the Illinois Early Intervention Services System Act.

What took so long? Chicago Tribune Editorial. © Copyrighted April 22, 2001, Chicago Tribune Company. All rights reserved. Used with permission granted by Sandra Spikes, E-mail: SSpikes@tribune.com

Under pressure from angry parents, the state in January went back to the drawing board on its ill-conceived plan to revamp Early Intervention, a program that guarantees therapies for disabled infants and toddlers. So by last week's deadline to present a better solution, what did they manage to come up with?
     A very familiar drawing.
     Earlier this year, Early Intervention was a mess. It had been ignored for so long by the Department of Human Services that administrators work up one day to discover that its $54 million budget wouldn't cover 118 million in bills.
     So they governor's budget director, Stephen Schnorf, stepped in to help. He offered a short-term financial Band-Aid and a proposed long-term fix: Split the program in two. Children with the most severe disabilities would be guaranteed therapy. Kids with more moderate delays, those who benefit most from treatment, would receive therapy only if money allowed.
     Parents howled.
     Enter a phalanx of advocates, state legislators and even an outside consultant firm from Massachusetts who volunteered his time. They knew the state wasn't accessing all the federal money it could. They knew it had not tapped into private insurance to cover some of the program costs. It had not asked wealthier parents to help shoulder some of the financial burden. It had not yet established a way to ensure children received only the services they needed. It had not coordinated with other federal-state programs for severely disabled children. It had not established enough cost-saving incentives for therapists to teach parents how to work with their kids at home.
     So they suggested ways to do all these things. After months of resistance—perhaps because these ideas would require actual effort, creativity and initiative-finally DHS Executive Director Linda Reneé Baker on Friday agreed to try them and keep the program as one. Sound like the legislators and advocates were doing someone else's job.
     They were.
     What brings us to the next point.
     The state's Early Intervention snafu of the last nine months pulls back a curtain onto a larger problem, namely, the Department of Human Services itself.
     Formed in 1997 through a merger of six state agencies, it's been around long enough for everyone to acknowledge that it's just too big.
     It lumbers, it punches in and out, it reacts. It douses fires rather than plans ahead. It finds reasons to not act when it should be looking for ways to make things happen.
     The intent behind the super-agency was to foster one-stop-shopping for social service recipients as well as greater cost and bureaucratic efficiencies. But its mediocrity, we have learned, can be expensive.
     Certainly, it is too complex for one person to handle. Either it has to be led by a chief executive officer who knows how to delegate authority, or it needs to be restructured. Some legislators already are talking about the need to appoint and empower a number of associate directors to handle its various and divergent responsibilities, from overseeing welfare reform to directing mental health services.
     Let's hope that happens, and that next time a bunch of outsiders won't be needed to jump in to bail the agency out of its own problems.

Down Syndrome Articles
Three Words by Jo-Ann Hartford Jaques Etobicoke, Ontario. Re-printed with the permission of Lyn Chua, E-mail: Lchua@chatelaine.com, Editorial and Administration Manager, Chatelaine Magazine, © Rogers Publishing Ltd. To be included in the upcoming Chicken Soup for the Canadian Soul.

As I stood outside the arena on that bitter February day, I had no idea of the warmth that I would find inside. Before entering the building to join 5,000 people, I slipped a three-word sign on my new baby's stroller. I very much wanted to connect with the people inside. I hoped that someone would read my sign and welcome us into their community.
Nine months earlier, I had given birth to my third child, Jimmy. He was a beautiful baby in every way. On his second day of life, I was told he had Down syndrome. I read everything I could get my hands on about Down syndrome and received encouragement from other parents. Jimmy was nine months old when I read that Toronto and Collingwood, Ontario, were hosting the Special Olympic World Winter Games. I wanted to go with my baby and get a peek into our future. Before leaving the house, I raced down to the basement and made a three-word sign out of white felt and red marker.
When Jimmy and I entered the arena, we took a seat alongside the boards. Within minutes, my sign was being noticed. Parents squeezed my hand and told me of the challenges and unbelievable joys I would know. Athletes came over to meet my baby. To wish him luck. Volunteers who traveled thousands of miles to be a part of the games attached their country's pins to the little square of felt. It was also noticed by a crew from TSN and, unknown, to me, by Frank Hayden, the founder of the Special Olympics movement worldwide.
It was Frank Hayden who put my little three-word sign into a context I never imagined. He told the Canadian Parliament and the news media it was the "defining moment" of the games and his 30-year career as a sports scientist. He said, "Thirty years ago, even 10 years ago, would a mother have walked into a public place and proudly announce that her child had a mental disability? She was looking to the future, not with fear and trepidation, but with great expectations."
Last July, I received a beautiful letter from an artist in Ottawa who was commissioned to create a logo for the ninth Special Olympic Canadian Summer Games in Sudbury, Ontario. Bernard Poulin wrote, "You and your child have been my creative muses... the 'challenge sign' on your baby's chest said it all." Poulin created a circular logo that he says, "reminds us of the hearts and souls of the parents, that fuel the dreams of the athletes, who are supported and encouraged by the organization." Poulin added: "It exists because in a crowd at the Centennial Arena in North York, Ontario, a proud mother and a beautiful child challenged the world with their daring."
The impact of the three words on that makeshift sign continues to amaze me. It said only, "Future Special Olympian."

Can Down's Receive Communion? Our Sunday Visitor, Pastoral Answers by Msgr. M. Francis Mannion. Re-printed with the permission of Gerald Korson, Editor, Our Sunday Visitor, 200 Noll Plaza, Huntington, IN 46750, 1-800-348-2440, ext. 2546, E-mail: gkorson@osv.com URL: http://www.osv.com/

Question: I have a son, now 40 years of age, who was born with Down's syndrome. He still has the mind of a child. My wife and I had him baptized when he was one month old. I have several times asked my parish priest and religious-education coordinator to let my son receive his first holy Communion, but I never get a satisfactory response. Do you have any idea as to how I should proceed?
— Name withheld, Maryland

Answer: Something is very wrong here. Assuming that he wishes positively to do so, your son should be receiving the Eucharist.
     Canon 777 of the Code of Canon Law states: "In accord with the norms established by the diocesan bishop, the pastor is to make provision that ... catechetical formation ... be given to those handicapped in mind or body insofar as their condition permits."
     The larger portion of this canon has to do with the preparation of the young for the sacraments, especially the Eucharist.
     Canon 913 answers the question. What is required for the reception of communion as follows: "For the administration of the most Holy Eucharist to children, it is required that they have sufficient knowledge and careful preparation so as to understand the mystery of Christ according to their capacity, and can receive the Body of the Lord with faith and devotion."
     In canon law, there has always been the recognition that the mentally handicapped belong in a special category and that they should be treated as an exception to the general norm.
     How should you proceed? If you have determined that your son can receive the Eucharist in a spiritually profitable manner, then you should make this perfectly clear to your parish priest, who should then feel morally obliged to welcome your son to Communion. Ask the pastor for a definite date on which you son can receive his first Communion.

Father's Journal Traduttore Traditore - Mothers, don't let your sons grow up to be linguists Our son Emmanuel thinks he is the wittiest kid alive. He teases his French tutor by answering first in Spanish, then in English, and finally, en français, si vous plais! He is incorrigible; he is also coming up with bad puns, just like his father.

     If your next request gets nowhere, then write to your bishop. Should the letter to the bishop get lost (which can happen, since bishops get a ton of mail every day and letters sometimes do get sidetracked), then write back to me.

Web Wanderings
Illinois Department of Human Services Early Intervention URL: http://www.dhs.state.il.us/ei
Secretary Baker's letter to parents, March 19, 2001:
DHS EI/ES Service Guidelines for OT, PT, and DT. Developed by the Special Advisory Panel on Early Childhood Development: [no longer available].