History of NADS
Building a Strong Organization
Even though MDC primarily served the Chicago metropolitan area, the organization received requests for information from all over the country. Therefore in 1972 when a decision to remove what became known as the “M” word from our name and materials, the organization changed its name to National Association for Down’s Syndrome. (The apostrophe s in Down’s was officially dropped in the early 1980’s.) It’s important to remember that NADS was founded 12 years before the National Down Syndrome Congress was formed and almost 20 years before the National Down Syndrome Society. However, our board of directors was comprised of people from the Chicago metropolitan area and, therefore, in 1972, Kay McGee and other NADS leaders spent a good deal of time with parents and professionals from other parts of the country helping to establish a new national organization. The Down Syndrome Congress was founded in 1973, and Kay McGee was elected to be its first Treasurer and NADS Board President Lucille Msall became Recording Secretary. Later the DSC added “National” to their name. Their board members were and still are from many states, which provides them with a strong national representation and perspective.
NADS continues to receive requests for information from all over the U.S. and our newsletter, audio/visual programs, print materials and our website are used by families and professionals throughout the country and beyond. However, some of our programs such as our Parent Support, Hospital Development and Mentoring Programs are only available in the Chicago metropolitan area. Also, the services we provide through our collaboration with the Adult Down Syndrome Center are limited to the state of Illinois.
History of the Parent Support Program
During the 1960’s and early 1970’s Kay McGee and Marjorie Lee, whom Kay described as “the most knowledgeable and involved parent there was,” would visit hospitals where they pleaded with nurses in the newborn nurseries to notify them when a baby was born with Down syndrome. In that way, they were able to connect with new families and provide them with the support they needed. (Ah, the things you could do before the HIPAA regulations).
Sheila Hebein becomes Executive Director
Sheila and Peter Hebein’s son, Christopher, was born in June 1972 and was diagnosed with Down syndrome just a few hours after his birth. The Hebeins were much more fortunate than the McGees when being told of their child’s Down syndrome diagnosis. Even though in 1972 some parents were still being advised by doctors to institutionalize their child, the Hebeins had a very sensitive pediatrician and he gave them good information and said “So much more is being done for children with Down syndrome now and the most important thing you can do for him is to love him.”
Sheila and Peter had a wonderful support system of friends and family and they were blessed in that Chris has enjoyed good health. Chris went to early intervention programs, to a special education school, to a Montessori school, 2 regular education schools and he graduated from Park School in Evanston in 1993. Park School provided Chris with an excellent education including a vocational program and he had several training opportunities in the community. During his final year of school, his vocational coordinator developed a job for him as a mail clerk. When he graduated he began working in that it position 40 hours a week. He has been in the same job for the past 19 years. Chris gets to and from work on the Chicago public transit system - he enjoys his job and is considered a valued member of his company. Chris has lived in the Evanston community all his life – he is an active member of St. Nicholas Church, serving for over 25 years as an altar server. He started playing the piano when he was 13 years old, he composed and performed for many years and even though he no longer takes piano lessons, he plays every day and continues to enjoy music. Chris has many interests, loves sports and social events. He has enjoyed quite a different life than those born with Down syndrome just a generation earlier.
Sheila was elected to the board of directors of NADS in 1974 and served on the board before becoming Executive Director in 1979. She served in this position for 30 years and retired in 2009. She continues to be involved with NADS working on special projects and still serves on the team of the Adult Down Syndrome Center, attending meetings and providing a parent perspective.As Executive Director of NADS Sheila developed all the following programs. She was involved on a national level, working closely with the 2 national organizations, the National Down Syndrome Congress and the National Down Syndrome Society and in later years, with the Down Syndrome Affiliates in Action. She also worked with many professional organizations throughout the years.
Development of Parent Support Program
Even though things were improving in the area of education (see Special Education for Children with Disabilities below), NADS leaders were still concerned that many new parents throughout the Chicago metropolitan area were not receiving the kind of medical care and support they so desperately needed when their baby was born with Down syndrome. Parents were taking their baby home from the hospital without accurate information and ongoing support. In fact, many were completely isolated in their communities. Therefore, in 1979 NADS developed a program that would train parents of children with Down syndrome to provide sensitive support to new families.
This formal training program was designed to teach parents to become “Parent Support Volunteers.” We recruited parents from all over the Chicago metropolitan area to participate in this important training. The two-day training prepared them for the variety of situations they would encounter in working with new families. A psychologist offered guidance about how to respond to families in crisis. A developmental pediatrician and a geneticist covered the kinds of health-related questions new parents might have—an important area, since many children with Down syndrome are born with heart defects or other serious medical problems. In order to maintain a fresh group of volunteers, NADS provided training for new groups of Support volunteers every 2 to 3 years. In the later training sessions, we added a panel of experienced support volunteers who shared their experiences. This veteran group discussed many of the significant issues a parent support volunteer might face, including how to take into account the different reactions of the mother and the father, how to distinguish between support and counseling, how to offer support to parents who had not yet decided whether to keep their baby, and how to help a family through a medical crisis. By the end of the second day of training, the volunteers were prepared for almost any scenario.
Local Support Groups
Because NADS served the whole Chicago metropolitan area, it was difficult to get people together on a regular basis. In the sixties and early seventies we held 4 meetings a year in downtown Chicago, but as the organization grew, we looked for ways to grow local support groups to make information more accessible for all families.
The first local support group in Chicago was started on the north shore in the mid-seventies by Sheila Hebein, who believed strongly in a grass roots approach to community organizations. A few years later individuals in other parts of the Chicago area felt a need to meet regularly with other parents and so groups such as Ups for Downs, Downs Development Council and the West Suburban Support Group for Down Syndrome were formed. These local groups continue to play a critical role in providing ongoing support and education to parents.
During the 1990s several support groups were developed for parents of adolescents with Down syndrome. A group was also formed for parents whose children with Down syndrome had challenging behaviors.
Temporary Foster Care
In 1982 a very important aspect of our support to new parents was our temporary foster care program. This program was established because we found that several sets of parents, within a very short period of time, had relinquished their rights to their child before the baby was a week old. Therefore, we worked with the Illinois Department of Children and Family Services and a private adoption agency, and several NADS families became licensed foster families. Our families provided loving care on a volunteer basis. NADS paid for their out-of-pocket expenses, but they volunteered their love and care. Initially the majority of children cared for by our foster care families were ultimately adopted. However, during 1992 we provided foster care for four infants, and three of the four later went home to their biological parents, and we facilitated adoption for the fourth child. We discontinued our foster care program in 1995 because of difficulties with the Illinois Department of Children and Family Services. However, we continue to facilitate adoption when necessary, but an adoption agency now handles the intensive counseling for the biological and adopting parents. At the present time it is less common for parents to relinquish their rights to their child with Down syndrome. However, in some circumstances adoption is the best option for the baby and for the biological families, and the Down syndrome community has been blessed with many wonderful adoptive families.
Hospital Education Programs
Even though NADS had trained support volunteers willing to assist new parents, we were still faced with the challenge of obtaining regular referrals of all new parents in the Chicago metropolitan area. In order to address this problem we developed an education program for medical professionals.
Shortly after our Parent Support Training, NADS developed an audio/visual program, “You Don’t Outgrow Down Syndrome, Counseling Parents.” With this tool Sheila Hebein, Executive Director, presented hospital education programs in Chicago area hospitals for pediatricians, obstetricians, geneticists, residents, social workers, nurses and other professionals who worked with new parents. This proved to be a very effective way to educate the medical community and it proved to be a good way for us to develop cohesive referral services for new parents. When this program started in 1980, NADS received only 15 direct referrals from Chicago area hospitals, but 10 years later, we were receiving 150 direct referrals.
The primary goals of our Hospital Education Programs were and still are:
- Provide physicians, residents, nurses and social workers with up-to-date information on Down syndrome and prepare them to give sensitive care and support to parents of newly diagnosed infants with Down syndrome. This is accomplished through our in-services, which are conducted in hospitals or in the offices of physicians.
- Maintain up-to-date materials for medical professionals.
- Develop effective referral systems in the medical community to ensure that new parents are directly referred to our Parent Support Program whenever possible.
Because there were over a hundred hospitals in the Chicago metropolitan area, the need for our education programs was also growing, so in 1984 NADS trained its first group of Public Speakers, and since that time our staff and trained volunteers have provided education programs in Chicago area hospitals. Throughout the years we have continued to train parents to be public speakers.