The Americans with Disabilities Act affords people with disabilities equal access to public services – but what is “access?”
Many of us equate ADA access with reserved parking spots, ramps and automatic doors. Physical access is essential, but there are other components of access that are just as important, especially for people with intellectual disabilities (ID).
For a service to be fully accessible, it must not only be available, but it must be responsive to the person’s needs. This has been the barrier for many individuals with intellectual disabilities attempting to access the health-care industry. Until recently, the generally poorer health of people with disabilities has often been associated with their disabilities. Research over the past decade is indicating that the health discrepancies in people with ID may actually be related to inequities in health care.
One barrier to health care may be the person’s inability to identify or express illness or symptoms. Family or other caregivers identify the need for health care and communicate the symptoms to the health-care provider.
Once the need for health care is identified, the person with ID may run into barriers within the health-care industry itself. The availability of needed services may be limited or unaffordable. Physical access (including transportation) may be a challenge. Reasonable accommodations, such as easy-to-read materials, may not be available.
People with ID also frequently suffer from “diagnostic overshadowing,” where physical problems are associated with the overarching disability instead of a potential acute condition. Health-care professionals often receive little training in how to work with people with ID, so unawareness, negative attitudes and discrimination can be barriers to care as well.
While some barriers may take sweeping policy and funding changes to address, others can be mitigated by health-care professionals and people with ID and their support systems.
Health-care professionals can further their education and understanding of the needs of people with ID and ensure that negative attitudes toward these people are eliminated within their staff. They can recruit people with ID to help them assess their practice and identify areas that might hinder equal access.
Caregivers can assist with access by helping to make sure that the person gets an annual physical. Regularly scheduled check-ups and screenings can be even more important for people with ID than for the general population. A preventive check may identify physical problems the person was unable to recognize or communicate.
People with ID should help prepare a fact sheet about themselves to share with health-care workers. This should not only include health information, such as allergies, current medications and nutritional needs, but also communication style and preferences, behavioral considerations and contacts for people who can help when complicated health decisions are needed.
Unequal access to health care is a danger to the basic health and well-being of people with intellectual disabilities. Fortunately, the danger could be averted with some reasonable but widespread changes to the health-care policy and practice.
Tara Kiene is director of case management with Community Connections Inc.
