History of NADS
Meeting the Needs of
Adults with Down Syndrome
During the early and mid 1980s, NADS’ primary focus was on education and support to families of children with Down syndrome. However, by the late 1980s we became more aware of the needs of adults with Down syndrome and their families. We received calls from parents whose son or daughter lived at home but had not gone to school and had been hidden within their families. We received desperate phone calls from parents who could not find even basic medical care for their son or daughter. We also found individuals with Down syndrome who had been institutionalized at birth and had no contact with their families – this group of men and women had been moved out of large state institutions into group homes or nursing homes, which in some instances were not much better than the large institutions. We asked ourselves the question – if we don’t help this group of adults who have been shunned and neglected all their lives – who will? We determined that NADS would try, and we set about looking for better ways to serve our adults.
In 1989 NADS developed a fellowship with The Family Study and Service Program at the University Affiliated Program (UAP) for Developmental Disabilities, University of Illinois at Chicago. Through the UAP fellowship we obtained the services of Dennis McGuire, who had an extensive background in family counseling. Dennis was finishing his final year of study for a PhD in social work. He was assigned to NADS 20 hours per week, and in return we provided the UAP with a $10,000 fellowship. Dennis did home visits throughout the Chicago metropolitan area and provided wonderful counseling and referral services. After obtaining his PhD, Dennis was hired by the UAP as a Family Counselor, but NADS was able to negotiate with the UAP to allow us to retain Dennis as our “fellow.” It soon became obvious to us that medical conditions were closely related to some of the psychosocial problems we encountered. Therefore we began to search for ways that we might expand the work Dr. McGuire had been doing with our families.
We searched far and wide to see if we could find a program that focused solely on the medical and psychosocial needs of adults with Down syndrome, and there was no such program. Therefore, we had to develop one. [For more about the development of this program, see “A Partnership to Celebrate” under the history menu at www.nads.org.
Adult Down Syndrome Center
After several years of searching and coaxing, NADS was successful in securing a commitment from Lutheran General Hospital in Park Ridge to serve adults with Down syndrome. The Adult Down Syndrome Center (ADSC) opened in January 1992 and Dr. Brian Chicoine was appointed Medical Director. This marked the beginning of a unique collaboration between NADS and Lutheran General Hospital. Initially Dr. McGuire split his time between the Center and theUAP but in March 1998 he joined the staff at the ADSC full-time as Director of Psychosocial Services.When the Center opened in 1992 patients were served 2 mornings a month, but by 2011 because of the huge demand, patients are now seen 5 days a week with 2 full-time physicians, a full-time nurse practitioner, 3 certified medical assistants, a full-time RN, a patient representative, a nutritionist, an outreachworker and patient advocate. NADS has always played an active role on the team of the ADSC, and we are very proud of this unique collaboration and the wonderful care teens and adults receive at the Adult Down Syndrome Center. NADS has helped fund the positions of outreach, patient advocate and part of the services provided by Dr. McGuire. In 2011 NADS was presented with a plaque recognizing that NADS has provided more than a million dollars to the ADSC. The Center has served over 5,000 individuals, and in 2011 there were over 7,000 patient visits.
Specialized Respite Care Program for Adults
Through the work of the Adult Down Syndrome Center NADS became aware of some families in crisis, and we developed a program to address their needs. The Specialized Respite Care Program was a short-term program designed to assist families in great need of immediate intervention. It was limited to individuals who were homebound or had an unusual family crisis. This program was developed by NADS and was administered through the Patient Advocate at the Adult Down Syndrome Center and through a local agency that provided respite care services.
Work Experience Program
During the 1990s and early in the 2000s, individuals with Down syndrome were graduating from High School or from special education programs with no job skills and with very few options after graduation. Therefore, because NADS had an office at the Adult Down Syndrome Center, we developed a work experience program, which could be used by students who attended school close to the Center.
NADS developed this program to provide teens and adults with Down syndrome office experience that would help prepare them to enter the job market. We also gave them an opportunity to learn appropriate work etiquette, such as dependability, punctuality, communication, task completion, wearing proper attire and other skills required for successful employment.
Our staff member whose office was at the Adult Down Syndrome Center coordinated this program, and she contacted local high schools every year informing them of this opportunity. The number of students varied from year to year, depending on the response of the high schools. Our staff member prepared the work, which included a variety of office tasks, such as copying, collating and preparing mailings and patient packets. However, a job coach accompanied each student and was responsible for their supervision.
This program ended when the demand for medical services significantly increased at the Adult Down Syndrome Center and space for the students was not available.
Adult Mentoring Program
NADS also found that many adults with Down syndrome were lonely. While many participated in recreation programs and Special Olympics, some were quite isolated, and so we developed a unique program to address this need. The NADS Mentoring Program was developed in 1997, and even though it has been difficult to maintain, when successful matches are made and friendships developed, we have found it to be well worth the effort.
The goals of this program are to provide support to adults with Down syndrome who fall into the following categories:
- Young adults who are out of school and living at home.
- Adults in need of assistance to get involved in their community.
- Older adults who have not received services and have become isolated.
Our ultimate goal is to create an environment whereby adults with Down syndrome have an opportunity to make new friends. We make an effort to match on the basis of interests, but because we hope to develop ongoing relationships, geographic location is a very critical factor. Each mentor was asked to be in phone contact with his or her friend once a week and to plan a get together once a month.