HELPING PEOPLE WITH DISABILITIES LIVE IN THEIR COMMUNITIES – RATHER THAN INSTITUTIONS

BY LAUREN AGORATUS, M.A.

Sometimes individuals with disabilities end up in nursing homes or other institutional settings, even as young as in their teenage years. There are alternatives to institutional care, and supports to help keep people in their homes and communities.

An 18-year-old young man was hospitalized and his family asked for an NG (nasogastric) tube, as he was having trouble eating. The hospital discharged him without it and against the family's wishes, sent him to a nursing home, where he got aspiration pneumonia and died.

There are other options. One determined mom, Julie Beckett, fought against having her child institutionalized. It was actually determined more cost effective to keep her daughter at home and the Katie Beckett waiver was created under Medicaid (Julie was named a Hero Advocate by Exceptional Parent Magazine; see reader.mediawiremobile.com/epmagazine/issues/207309/viewer?page=31).

Years ago, some states created settings for people with disabilities, who were not helped before. However, although innovative at the time, it later resulted in segregating people with disabilities. Medicaid was originally paying for care in these

separate facilities. Later, Home and Community-Based Services (HCBS) was seen as better and mutually beneficial. To Medicaid, it was cost-effective, and it allowed Medicaid enrollees to stay in their homes and communities, with appropriate supports. These supports included help with personal care, activities of daily living, and even nursing.

Now with the Olmstead decision against segregated discrimination of people with disabilities, Medicaid Home and Community Based Services (HCBS), Managed Long-Term Services and Supports, and "Money Follows the Person" (MFP) programs, there are better options.

YOUNG PEOPLE WITH DISABILITIES IN INSTITUTIONAL CARE

Sadly, the proportion of younger people with disabilities in nursing homes has actually increased, even as admissions for 

COMMUNITY CARE: There are state variabilities in the provision of Home and Community-Based Services, and these should be expanded to defer institutional care.