Mental Retardation Vol.32, No. 2, 100-106 April 1994
Development of a Clinic for Adults
With Down Syndrome
Brian Chicoine, Dennis McGuire, Sheila Hebein, and Donna Gilly
Abstract: In an effort to better support the adults with Down syndrome that it
serves, parents from the National Association for Down Syndrome, a parent
organization, worked with staff members from The Family Study and Service
program of the University Affiliated Program for Developmental Disabilities of
the University of Illinois and the Department of Family Practice of Lutheran
General Hospital to develop a clinic for adults with Down syndrome. The clinic
was developed to provide comprehensive health care with an emphasis on pre-
ventative services. The multidisciplinary approach of the clinic has proved to
be effective in the management of a variety of patient care needs. The most
common health problems found were discussed.
In January of 1992, the Lutheran General Adult Down Syndrome Clinic opened
and served its first patient. The opening came after several years of effort to improve the
delivery of health care and supportive psychological and social (psychosocial) services
for adults with Down syndrome. The development of the clinic came primarily at the
urging of parents representing the National Association for Down syndrome (NADS). In
the present article we have discussed the development and operation of the clinic and
described the services provided. This information can serve as a model for others who are
seeking to provide care for adults with Down syndrome. We hope that it will also
encourage those who want to expand the services they provide to this patient population.
The NADS is a parent-driven advocacy organization that has been providing
support services to individuals with Down syndrome and their families in the Chicago
metropolitan area for over 30 years. Although the parents who belong to this association
have been able to effectively help parents of children with Down syndrome, they have
been frustrated by the limited availability of resources for adults with this syndrome.
Until the 1960s, adults with Down syndrome primarily lived in large institutions
(Cooley & Graham, 1991; Merker & Wernsing, 1984). Consequently, health care and
sup-portive services were viewed as a matter for institutions. However, during the past 20
to 30 years, more children with Down Syndrome have been raised by their parents, and
now the majority of adults with Down syndrome live in the community, either with their
families or in residential programs (Thomas, 1986). Many parents of sons and daughters
with Down syndrome living in the community called on NADS to help them locate
comprehensive health care and supportive services for their children. The organization
responded by identifying individual resources within the medical community to whom
they could refer adults with Down syndrome.
In addition, NADS surveyed its members regarding the needs of adolescents and
adults with Down syndrome and their families regarding psychosocial issues (National
Association,1989) and health care (National Association,1990). The survey was included
in an issue of the Association's newsletter, which is distributed to members and sent to
1,200 addresses; approximately 400 of these members are parents of adults with Down
syndrome. Sixty-five responses were returned, all from the Chicago metropolitan area
and, presumably, all from parents of a person with Down syndrome.
Regarding health care, parents expressed a number of needs, including health care
availability and health screening. They were interested in obtaining regular physical
exams and other health screening tests for their sons and daughters with Down syndrome
to warn them of problems at an early stage or reassure them that certain findings are
normal and/or did not need treatment.
Respondents also expressed the need for a physician knowledgeable in the
treatment of adults with Down syndrome who would, therefore, be aware of problems
(e.g., hypothyroidism) that occur more frequently in this population (Pueschel &Pezzullo,
1985) and less frequently (e.g., hypertension) (Pueschel & Pueschel, 1992). They were
also concerned about the transition from pediatric to adult medicine. Although it may
have been reassuring that their son or daughter had been cared for by the same physician
for years, a physician who was knowledgeable about developmental disabilities, parents
still expressed some concerns. The adults with Down syndrome and their parents were
not comfortable seeing a physician whose office was clearly for children. The parents felt
that many pediatricians were unfamiliar with questions addressing the unique needs of
adults with Down syndrome.
Financial issues were another concern for both parents and physicians. Parents
found it difficult to find a physician who would accept Medicare or Medicaid patients.
Some pediatricians were unfamiliar with Medicare regulations as few of their patients
require such funding.
Second, surveys of the psychosocial issues and concerns of NADS members
showed that families were very concerned about the absence of viable social and job
opportunities once their sons and daughters transitioned out of the school system into
adult life. Some families reported that loneliness, withdrawal, depression, and weight
management problems were frequent responses to this transition. They also reported
verbal and nonverbal expressions of frustration and even despair among their adult sons
and daughters, particularly when comparing their limited range of opportunities to
siblings and others without developmental disabilities. Further, some families reported
enormous difficulty locating mental health professionals with either the interest or
experience to help ameliorate the painful or debilitating symptoms of this transition.
Three years prior to the opening of the Lutheran General clinic, the NADS Board
responded to these issues and concerns by funding a fellowship that would provide
clinical and consultation services for families with adults who had Down syndrome. The
services were provided by the Family Study and Service Program (hereafter called the
Family Program), a clinical program of the Illinois University Affiliated Program in
Developmental Disabilities at the University of Illinois at Chicago to serve the needs of
individual families, to define and document areas of general concern, and to assist in the
development of and advocacy for more responsive social programs. Combining the
support and advocacy network of NADS with the resources and experiences of the Family
Program staff in both the clinical and developmental disabilities fields allowed a unique
partnership that successfully increased the service options available to families of adult
members. Since its inception, hundreds of families have been served directly by Family
Program staff or through a network of service providers who were trained or identified by
NADS and Family Program staff as knowledgeable and sensitive to the unique needs and
concerns of adults with Down syndrome.
A review of the problems seen by personnel of the Family Program suggested that
medical illnesses could be related to at least some of the psychosocial problems
encountered. That possibility and a review of the survey information made it clear to
NADS staff that a comprehensive clinic for adults with Down syndrome was needed, and
they asked Lutheran General Hospital to develop such a clinic. In 1990, the hospital's
Department of Family Practice accepted that challenge.
The availability of training for physicians in the care of adults with Down
syndrome is limited. Therefore, the medical directorship was assigned to a member of the
faculty of the Department of Family Practice (the first author) who had interest in and
experience in caring for adults with developmental disabilities. Extensive review of the
literature and regular conference attendance has increased the director's understanding of
the care of adults with Down syndrome.
The next step in the development of this comprehensive health care clinic was for
the medical director to review the aforementioned concerns of NADS members and the
findings of the staff of the Family Program and then meet with their representatives to
discuss a means for creating the clinic. The medical director was then asked to join the
Adult Issues Committee of NADS, which included the Family Program fellow. This
provided a forum for open discussion and eventual implementation of the Lutheran
General Adult Down Syndrome Clinic.
One of the most important aspects of the clinic development, both to date and in
the future, is the association with NADS. Input from NADS on patient questionnaire
forms, research efforts, feedback from families, and many other operational and
philosophical issues has helped keep the program focused on the needs of the patients and
families and how to implement them. The input into this article by the third author, the
executive director of NADS, reflects the regular input into the functioning of the clinic.
In addition, the efforts of NADS members to inform the community abut the clinic are
important. Forty-seven percent of the first 115 patients were NADS referrals. Table 1
lists the sources of all referrals.
Referral Source of the first 115 patients Seen at
the Lutheran General Adult Syndrome Clinic Source
Clinic activities/publicity 24
Community agencies 18
University Affiliated Program 7
National Association for Down Syndrome. Includes
lectures at local meetings attended by community
agencies and parents, advertising, and articles in hos-
pital publications. Referrals came from the second
Cooperation with the patient primary care physician is also important. Although
referral from physicians has not been a source of a large number of patients to date (see
Table 1), follow-up with the primary physician on certain problems is important. This is
especially true for patients who travel a great distance.
The key, again, to implementation of the recommendations was listening to the
perceived needs as described by NADS and focusing on provision of those services,
which helped (a) prevent duplication of services available to patients in their local areas
and (b) keep down costs. In addition, it required discussions with multiple departments
inside and outside of the hospital system describing the needs and development of a
system to provide for them. For example, rather than trying to hold the clinic in the
limited space near the hearing booth in audiology, the Audiology Department agreed to
send an audiologist to the Family Practice Center with a portable hearing machine for
A major hurdle was cleared through the joint efforts of Family Program and
NADS, which has continued to fund the fellowship at the Family Program (the position
held by the second author). As a social worker with both clinical skills in counseling and
knowledge of the available social support networks, he is an important element of the
Recruitment of members of the audiology and nutrition departments who had
experience working with children and adults with a variety of developmental and/or
chronic health problems was also important. Nursing personnel were sought who had a
strong outpatient clinical background and a desire to serve the needs of patients, families,
and other care providers. Extensive experience with adults who have Down syndrome,
although desirable, was not mandatory. Good candidates were found for all the positions
within the hospital system. In choosing candidates', the clinic director focused on the
candidates' desire to serve the patients and their willingness to continue to learn and
develop new ways to provide services.
The Lutheran General Adult Down Syndrome Clinic which opened in January
1992, incorporates the principles of a multidisciplinary approach to comprehensive
medical care with an emphasis on preventive medicine and psychosocial adaptation. The
clinic was designed to compliment the existing services provided by primarily care
physicians and other service providers in the community.
The initial contact with the clinic is through a phone call taken by a certified
medical assistant in the Family Practice Department. The needs of the adult with Down
syndrome are discussed with the family member or the care provider and appropriate
appointments are scheduled. An information packet is then mailed that includes a detailed
clinic description, a medical and social questionnaire, and a release of records form to
obtain previous medical data. After the returned information is reviewed by the clinic
director, an effort is made to help the patient and his or her family or caregiver decide
whether other consultations, lab tests, or x -rays will be necessary on the day of the clinic
visit so appropriate appointments can be made. Further discussion and decisions
regarding additional tests and consultations are made on the day the of the clinic visit.
The medical director evaluates each patient by reviewing the complete medical
history and completing a physical examination. This information is recorded on forms
tailored for adults with Down syndrome. Comprehensive care is provided, including
pelvic exam and PAP smear, immunization update, and other minor procedures as
Each patient is then evaluated by the Family Program social worker, who assesses
relevant psychosocial issues and concerns. Information is gathered directly from the
patients and from accompanying family members or agency staff. This information
includes the personal resources, skills, and attributes of the adult with Down syndrome;
the availability of economic, educational, and recreational resources in the community;
and the network of family, peers, and community supports. Assessment instruments
include the Checklist for Psycho-social Concerns, which is administered in a structured
interview with a family member or caregiver and the patient. This interview 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-III-R
(American Psychiatric Association, 1987) by the second author. It is suited to the unique
needs and expressive limitations of adults with Down syndrome. A standardized
instrument, the Developmental Diagnostic Profile, is also used to assess adaptive and
living skills (Brown et al., 1986). When administered during yearly clinic visits, this
Profile is useful in assessing strengths in independent living skills. Changes in these
living skills would indicate the need to evaluate for the possibility of early onset aging or
dementia processes, both of which have been hypothesized to occur in this population,
and to evaluate for reversible causes of the decline in skills.
An audiologist performs an audiogram for each patient and a nutritionist makes
dietary recommendations. A modified version of the Down Syndrome Checklist
(Ohio/Western, 1992) is used. Therefore, each patient has as a minimum the following
labs: complete blood count, chemistry profile, thyroid uptake, and thyroxine
and thyroid stimulatory hormone levels. Cervical spine x-rays are obtained if they have
never been done or if the history or physical exam indicates a need for this procedure.
Consultants in a variety of specialties are available.
The patient sees each health care provider on the same day at the clinic, and a
brief verbal summary of the findings is provided to the patient and parents or caregiver. A
written report documenting the findings and the recommendations for care, further
consultation, additional testing, and follow-up is also provided. This includes a summary
of the psychosocial evaluation detailing strengths, resources, problem areas, gaps in
programs or services, and recommendations. This report is sent to the parent or caregiver,
the primary physician, and other pertinent care providers. Follow-up clinic visits are
available for further consultation with the clinic staff as needed.
At the end of the first 18 months, 115 patients had been served in the clinic. Many
patients have been seen for routine physical exams with an emphasis on prevention and
early detection of health problems. The most common problems encountered are outlined
in Table 2.
Most Common Health problems of first patients
of the Lutheran General Adults Down Syndrome
Health problem n
Tinea pedis 72
Impaired vision 68
Impaired hearing 58
Note: January 1992-July 1993.
The clinic has also been used as a referral source, particularly by NADS,
community service agencies, and local residential facilities, for problems that have been
difficult to diagnose or treat. These organizations have been the source of a number of
referrals of adults with Down syndrome whose intellectual and functional capabilities
seemed to have diminished. The effectiveness of the multidisiplinary approach of the
clinic is well-demonstrated with this type of problem or concern. The patients presented
with decreased self-care, loss of skills in activities of daily living, loss of verbal skills,
loss of job skills, withdrawal, slow down in activity level, paranoid features, increase in
talking to themselves, aggressive behavior, self-abuse, change in sleep patterns, weight
change, and/or persistent forgetfulness. The diagnoses of 48 patients presenting with
decreased level of function are shown in table 3. In addition, because Alzheimer's disease
is felt to occur more frequently and at a younger age in some individuals with Down
syndrome (Dalton & Crapper-McLachlan, 1986; Wisniewski, Rabe, & Wisniewski, 1987;
Zigman, Schupf, Lubin, & Silverman, 1987), often the family or caregiver expressed
concern that this was the cause of the diminishing skills. Although the population seen at
the clinic to date has been fairly young (average age of 34 years), the etiology for the
lower functioning has been found to be a diagnosis other than Alzheimer disease in
almost all cases to date.
In addition, numerous patients have been seen who are healthy, well-adjusted, and
living productive lives. The multidisiplinary approach of the clinic has provided a great
deal of insight into these individuals as well. Some patients expressed a need to discuss
the stress of daily life or assistance in finding suitable programs.
Diagnoses of Patients (N=48) Presenting With
Adjustment reaction 13
Note: Some patients had more than one problem contributing
to the decline, and, therefore, the sum of the diagnoses is greater
Includes one each of alcoholism, seizure disorder, hyperthyroidism,
severe vision impairment, recurrent lung infections, menopause, severe
nonsurgically corrected congenital heart disease, possible sexual
abuse, and sinus infection.
In response to psychosocial needs, services have been provided and coordinated
between NADS, the Family program, and Lutheran General Hospital. Support groups led
by a social worker focus on social, employment, and educational issues and provide an
opportunity for adults with Down syndrome and other developmental disabilities to share
concerns and to understand and appreciate normal and healthy aspects of their
personalities. In addition, groups have addressed weight awareness issues. An exercise
videotape has been produced featuring a physician and a nurse leading four young adults
with Down syndrome in an exercise program, and an exercise class is currently being
When problems arise, a variety of approaches are used. A growing network of
contacts with community service organizations is being developed to assist in provision
of employment training and placement, home medical care, and respite care. Employment
issues are frequently a part of psychosocial problems. In addition, extensive discussions
with families or residential facility care providers, home visits by the medical director and
social worker, and assessments and appropriate referral to family therapists is provided.
Support groups for families are also available, as is an extensive support network through
NADS. Involvement with and evaluation of the home situation, whether it be the family
or residential care facility, has been important in understanding potential areas of conflict
and resources within the home setting that can be useful in problem resolution. Assistance
with residential placement has been provided when appropriate and desired by directing
individuals to appropriate community agencies and providing assistance in negotiating
the system. When placement is appropriate and desired, further evaluation of the home
setting and referral for additional assistance is sought to optimize the setting until
placement is available.
The clinic is held twice a week, and up to 4 patients are seen in each session. Each
patient spends between 3 and 4 hours at the clinic. Although the cost varies depending on
the needs of the patient, the basic care as outlined is billed as approximately $350 to $450
and has been covered by Medicare, Medicaid, and the private insurance.
The costs of the clinic include several areas. Salaries and benefits for the physician
and staff and office space are primarily provided by the Department of Family Practice.
Physician services are billed in the standard fashion as are lab and X-ray. Audiology and
nutrition services are also directly billed services. The social work services are generally
not reimbursed and, therefore, are provided free-of-charge with the assistance of funds
provided by NADS. Although only about 50% of the expenses are covered with gross
revenues, further expenses are covered through the assistance of NADS, the Lutheran
General Foundation, and as charitable services provided by the Lutheran General Health
A patient satisfaction survey is sent to each family or care provider after the clinic
visit. Approximately one-half have been returned. The responses to date have been
predominately appreciative of having medical services tailored to the needs of adults with
Down syndrome. Recommendations have been made and acted on regarding improving
some areas of the clinic process. Another area of change based on the survey responses
has been expanding availability of follow-up at the clinic. The original NADS survey
suggested that people were looking for a clinic primarily to get an annual exam and not
for ongoing care. Their intent was to continue ongoing care with their own physician.
However, the patient satisfaction survey and discussions with families and care providers
revealed that many were interested in on-going services. The needs were particularly
centered on follow-up with the social worker and /or the physician. Therefore, the clinic
was expanded to include these services. In addition, both the medical director and the
social worker continue to serve on the Adult Issues committee of NADS and regularly
seek input from the committee.
Research is an important part of the clinic services. Defining optimal care of adults
with Down syndrome and evaluating its effectiveness has not been as thoroughly studied
as it has with children who have Down syndrome (Thomas, 1986). A database of the
associated health problems and the medical and psychosocial history is being compiled.
An ongoing evaluation is also being conducted on the services of the clinic, the health
care needs of adults with Down syndrome, and the effectiveness of the care provided.
The clinic also includes community education for adults with Down syndrome,
their families, and other caregivers. Several talks have been provided by clinic staff for
local organizations and residential facilities. In addition, the clinic serves an educational
function for physicians, clinicians, and other providers in the community and for residents
and medical students in the medical center. This is provided both by lecture and direct
involvement by residents and students in the clinic.
A young woman with Down syndrome was recently hired to perform data entry and
secretarial services for the clinic. She not only directly provides an important service to
the clinic but also indirectly contributes to the educational component by demonstrating
to the local community and others some of the range of skills that adults with Down
syndrome can achieve.
After a direct request from and working closely with NADS, the Lutheran General
Adult Down Syndrome Clinic was developed to better serve adults with Down syndrome.
This population has the same basic health needs as the general population as well as some
special ones; the clinic is a model to meet all of these. In addition, research in these areas
is limited and, therefore, investigations will be undertaken through the clinic to evaluate
health care and psychosocial needs. The clinic will also serve as a source of information
for adults with Down syndrome and their families. practicing physicians-in-training, and
others in the health care fields. The clinic is more than a model for providing good health
care for adults with Down syndrome and for meeting these other goals. We hope that this
information on the clinic will also provide a catalyst for further discussion on how to
optimize the health care of adults with Down syndrome.
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Received 4/ 30/ 93; accepted 11/9/93.
Editor-in -Charge: Naomi Karp
Authors: BRIAN CHICOINE, MD, Medical
Director; DONNA GILLY, CMA, Lutheran General
Adult Down Syndrome Center, Department of Family
Practice, Lutheran General Hospital, 1775 Ballard Rd.,
Park Ridge, IL 60068. DENNIS McGUIRE, PhD,
Coordinator of Family Support Services, Family
Studies and Services Unit, University Affiliated
Program in Developmental Disabilities, University of
Illinois, 1640 W. Roosevelt Rd., Chicago, IL 60608.
SHEILA HEBEIN, BS, Executive Director, National
Association for Down Syndrome, P.O. Box 4542, Oak
Brook, IL 60522.