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The Down Syndrome Clinic Model |
In the metropolitan Chicago area, the NADS has been providing advocacy services for persons with Down syndrome since 1961. This voluntary association was
started by parents of young children and, therefore, for a number of years
their focus was on children and adolescents with Down syndrome. However,
as their sons and daughters grew beyond childhood, new concerns became evident.
Parents felt that their children had received good care from their pediatricians
and family physicians, but that as their children reached adulthood, they
recognized that the dearth of practitioners experienced with adults development
and intellectual disabilities could impede good health care. To address these
concerns, the NADS initially provided funds to help pay a social worker to
meet with persons with Down syndrome, their families, and caregivers, and
provide counseling services, advocate for services, and support the parents
when their sons and daughters were having problems.
During the early 1990s, NADS also surveyed its members regarding the psychosocial
and medical concerns they had and confirmed the need to address the medical
and psychosocial issues associated with aging of their sons and daughters
with Down syndrome. A major concern expressed was a decline in function experienced
by some persons with Down syndrome and whether the decline could be secondary
to Alzheimer's disease. Parents expressed particular concern for how their
sons and daughters were being evaluated when they presented with a decline
in function. Numerous stories were shared of person with Down syndrome presenting
with a decline in function and being given a diagnosis of Alzheimer's disease
after a brief history and physical exam, little to no diagnostic studies,
and no discussion as to the differential diagnosis of Alzheimer's disease
and the need to exclude other diseases that present similarly but are reversible.
The parents sensed that many physicians had little training with regard to
adults with intellectual disability and were making a diagnosis without an
adequate evaluation. They expressed interest in the development of a clinic
that would specifically address the needs of adults with Down syndrome and
their families and care providers.
These concerns led to a collaborative effort being undertaken by the NADS,
the Lutheran General Hospital, and the University of Illinois at Chicago
to develop a multidisciplinary clinic. Using a community-oriented primary
care model as a foundation, a new clinic was designed based on discussions
with the NADS staff and other parents. Since so many of the concerns involved
both medical and psychosocial issues, it was felt that a team approach would
be the best strategy. Thus, the initial staff included a physician and social
worker working in a tandem. As the clinic began seeing adults, several other
team members were added. One, a specialist on hearing assessment, was added
because it was felt that hearing impairment was a common problem in persons
with Down syndrome. Audiology screening services were now included to help
determine whether hearing was a cause in notable behavioral decline. In addition,
a nutritionist was added because obesity was also common in persons with
Down syndrome. Parents expressed significant concern about obesity and a
need for sound nutrition.
As part of the development process, core staff also visited other local clinics
and reviewed what services were being offered. Soon additional disciplines
and services, such as medical consultants, physical therapists, and occupational
therapists, as well as vision screening were included as part of the clinic's
offering. However, due to cost and inconsistent need, these were provided
as referral services and not provided on-site. For example, it was observed
that most adults had their own optometrist or ophthalmologist and, thus,
providing these services would duplicate what the family was already accessing.
As now constructed, the Down syndrome clinic model used at the Adult Down
Syndrome Center calls for each adult to be seen by a family practice physician,
a social worker, an audiologist, and a nutritionist. Several assessments
are carried out as part of normal data gathering. For example, a health maintenance
checklist (based on the Down Syndrome Medical Checklist, Ohio/Western PA
Down Syndrome Network) is completed. This checklist outlines appropriate
health screening guidelines and is used to guide the health care provided.
Questionnaires are used that focus on health problems that are seen more
commonly in persons with Down syndrome. A social services review is carried
out using the Checklist for Psycho-Social Concerns, which is administered
in a structured interview with a family member or care provider or both and
the adult. This interview screen is an adaptation of the diagnostic criteria
for depression and other potential problem areas taken from the Diagnostic
and Statistical Manual of Mental Disorders (DSM-IV, American Psychiatric
Association). An adaptation of a standardized behavioral assessment instrument,
the Developmental Disabilities Profile, is also used to access adaptive and
living skills. In addition to the annual evaluation by the physician, social
worker, nutritionist and audiologist, thyroid blood tests are ordered annually.
Neck X-rays are used to evaluate atlanto-axial instability and are administered
on all new patients seen as needed. Hepatitis B screening and hepatitis immunization
are performed if indicated, and eye exams are carried out once every one
to two years. Other routine preventative medical services are performed on
a schedule indicated for the general population.
Personal well-being and an emphasis on health and wellness are foundations
of the clinic's activities. Since hypothyroidism, atlanto-axial instability,
chronic hepatitis and other health problems are common in people with Down
syndrome and can lead to physical and mental deterioration or both if left
untreated, reviews for these conditions are included as part of the health
status review. We have observed that the majority of the adults seen at the
clinic are living healthy lives. In addition to benefiting from the availability
of medical and psychosocial services, we have found that social opportunities
afforded adults with Down syndrome are correlated with being healthy.
The clinic opened in 1992 with at least two adults being seen each of two
mornings a month. The demand for the services has grown steadily, and the
clinic staff now sees referees five days a week. The clinic is operated by
Advocate Health Care, a not-for-profit health system, with additional funding
from Advocate Medical Group, a large multi-specialty medical group, and the
Advocate Foundation. IN addition to providing the services of the physicians,
the office staff, the audiologist, and the nutritionist, Advocate Health
Care provides for the funding for the office space and other office expenses.
NADS provides funding for a parent who serves as an advocate who advises
the adults, families, and care providers and helps them obtain services.
NADS also provides partial funding for the services of the social worker,
a consulting psychiatrist, and a postdoctoral research fellow.
All of the collaborating organizations work together to provide several other
services, including an exercise program, patient and family group sessions,
a resource center, and educational programs for parents, care providers and
professionals. The exercise programs have been beneficial in helping adults
lose weight and providing an opportunity to socialize. The group sessions,
during which the families meet in one room and the adults with Down syndrome
in another, each led by a social work student, have been very helpful for
both groups to discuss common concerns, support each other, and learn more
about solving problems that they have encountered. The staff of the clinic
have seen more than 400 adults with Down syndrome and have become familiar
with the similarities and differences of persons with Down syndrome to persons
in the general population with regard to general health care and, specifically,
decline in function and Alzheimer's disease.
The clinic was developed and continues to function through a cooperative
effort of a variety of organizations. The input of the parents is extremely
important to the approach used to provide care as well as to the success
of the clinic. The majority of referrals have come through the NADS. The
staff and parents of the NADS continue to advise on the functioning of the
clinic and in developing additional programs to meet the needs expressed
by adults, families, caregivers, and clinic personnel.
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