CONNECTICUT EXAMINES HEALTH CARE IN THE COMMUNITY

People with development disabilities who live in the community rely on the generic health care system to meet their needs for medical services. However, there has been a lack of systematic information available concerning the way in which such individuals are served by the existing system. The results of a Connecticut survey shed new light on this important topic.

In response to concerns about the access of people with disabilities to high quality health care in Connecticut,Governor Lowell Weicker appointed a Medical Advisory Panel to help the Department of Mental Retardation (DMR) in devising strategies for making generic health care services more available to people with disabilities. As an initial step in this direction, the panel decided to conduct a survey of health practitioners, people served in DMR-funded community residences, and community agency staff in order to learn more about how individuals currently interact with the generic health care system and identify the barriers they face in obtaining such services. The Community Medical Survey Report (released in November, 1993) summarizes the results of this survey.

The survey found that nearly all community residents with developmental disabilities relied on publicly-funded health programs (principally Medicare and Medicaid) to pay for the services they need. Only six percent of such individuals had private health insurance. Almost all individuals had seen a primary care physician or dentist within the past two years. Typically, individuals were seen at he practitioner's office rather than in a clinic setting. While DMR contracts for some medical services, most individuals obtained their health care from private, community practitioners.

Health practitioners, residents, and service agency staff were asked to rank in importance and comment on various potential barriers to obtaining high quality health care services on behalf of people with mental retardation. The intent was to obtain information that would assist DMR and the Panel in identifying strategies for improving access and the quality of services. The survey revealed that:

・ Reimbursement rates are problematic for all parties. Practitioners felt Medicaid payment rates are too low relative to the time needed to care for patients with mental retardation. Low payments tended to restrict access to physicians and dentists.

・There was broad agreement that administrative requirements were burdensome for all concerned. For examples, over 6O percent of health practitioners that responded to the survey felt that DMR policies governing documentation and paperwork were particularly taxing. Other DMR policies requiring extra layers of review for treatment decisions were also singled out as onerous. One practitioner complained that "[c]ommittees and bureaucracy interfere/inhibit [our] ability to treat patients."

・The survey explored the extent to which the special needs of people with mental retardation posed a barrier to accessing appropriate health services. Practitioners felt such special needs were less problematic than did community residents and staff. When health practitioners identified special needs as a barrier, they usually referred to the additional time needed to treat certain individuals with mental retardation as the chief barrier. The report points out that this finding "may serve to reassure staff and families that the special needs of people with mental retardation are not seen as a major challenge to providing medical services by physicians. Indeed, it seems that staff are more sensitive to this issue than the practitioners."

・Practitioners, however, did identify what were termed "staff issues" as being a barrier to effectively serving people with mental retardation. These issues revolve around how well community staff are versed in the person's medical history and treatment needs so that health practitioners can deal with their problems expeditiously. The report noted that "[p]ractitioners believe both accurate medical information and follow-up by knowledgeable staff are very important elements in providing quality medical services to people with mental retardation."

・On the other hand, individuals with disabilities and community agency staff singled out the "lack of prior experience" or "lack of formal training" among health practitioners as real barriers to obtaining high quality health care services for people with mental retardation.Practitioners, however, regarded these as less important problems. The differing views concerning this topic prompted State officials to conclude that "[DMR] should develop strategies to train and sensitize medical providers to the needs of their patients with mental retardation."

Overall, health practitioners regarded reimbursement, administrative, and staff-related issues as the most significant major barriers to meeting the health care needs of people with mental retardation.

The survey also explored other related topics, including:

・ Health practitioners were asked whether they made special accommodations for people with mental retardation. Out of the 71 practitioners who responded, 19 (27%) said that they did not, while another 16 indicated that their offices were accessible to people with physical disabilities. The remaining 38 practitioners cited a variety of accommodations they had made, including: (a) flexible scheduling to allow them more time with such patients; (b) making home visits; (c) hiring office staff with experience in serving people with mental retardation; and, (d) not wearing white while examining such individuals.

・ The survey also asked health practitioners whether they saw a need for further education concerning issues related to serving people with mental retardation.
About one-half the respondents saw such a need and suggested several education strategies. Topic of particular interest to practitioners included psychiatric and behavioral interventions, end of life issues, information concerning ancillary services, and research updates.

・ The survey invited physicians and dentists to describe the types of actions DMR might take to increase their willingness to provide services to people with mental retardation. More than half "strongly expressed the need to make administrative changes such as reducing paperwork ... and reviewing or revising DMR policies and regulations...".

Along these lines, the survey furnished DMR and the Advisory Panel with useful insights concerning possible steps for improving the access of people with mental retardation to generic health care services.

DMR officials point out that "[p]eople often make assumptions about the health care system as it affects people with mental retardation. Undertaking this survey was our first opportunity to objectively determine what works and what doesn't for our clients' health care needs." One key lesson learned is that "the system or process itself constitutes the major concern for which corrective action can be taken." As a result of this survey, DMR officials expect to follow-up in various ways, including: (a) streamlining or reducing paperwork requirements; (b) working with the State's Medicaid agency to increase payment rates; (c) identifying staff training strategies in order to improve communication with health practitioners; and, (d) developing educational and other resources to better equip health practitioners to meet the needs of people with mental retardation.

The survey results furnish especially useful information concerning the issues that health care practitioners regard as barriers to serving people with mental retardation. In particular, the special chaIlenges of serving an individual with substantial cognitive limitations appears to be a less important barrier to securing generic health care services than a variety of other systemic issues. FMI: Marcia Noll, Director of Community Medical Services, Department of Mental Retardation, 90 Pitkin Street, East Hartford, CT 06108 (tel 203/725-3839).

WOMEN WITH DISABILITIES: RESOURCES

Childbirth Education for Women with Disabilities and Their Partners is a new training manual designed to "give professionals the information they need to support women with disabilities and their partners during pregnancy." Sections of this manual are devoted to topics related to pregnancy and childbirth for women with physical disabilities and mental retardation. To purchase a copy of this manual (Price: $65, which includes subsequent updates), please contact: Debbie Cheatham, The Nisonger Center University Affilliated Program, Ohio State University, 1581 Dodd Drive, Columbus, OH 43210 (tel 614/292-9670).

The Arc of New Jersey's Women's Health Project is aimed at promoting better awareness health care issues for women with developmental disabilities. Project activities include educating family physicians and gynecologists about caring for women with physical or cognitive disabilities, as well as developing health care education materials that cover topics of particular concern to women. For example, this year the project will publish a workbook designed to aid women with developmental disabilities in understanding how they can be more involved in their own health care.
FMI: Beverly Roberts or Stella Natale, Mainstreaming Medical Care Program, The Arc of New Jersey, 985 Livingston Ave., North Brunswick, NJ 08902 (tel 908/246-2525).