ISSUE #5: The proposed regulations to "prevent the provision of unnecessary or inappropriate care" will do the opposite: limit access to needed services and prevent care that is determined to be appropriate by the individual and people who are familiar with his or her needs.
CMS proposes to limit HCBS waiver services only to settings that are "integrated in the community, provide meaningful access to the community and community activities, and choice about providers, individuals with whom to interact, and daily life activities..." Other comments criticize settings that do not allow individuals “to choose whether or with whom they share a room, limit individuals’ freedom of choice on daily living experiences such as meals, visitors, activities, and limit individuals’ opportunities to pursue community activities.”
Any form of congregate living, even living with one’s own family, will inevitably have rules affecting an individual’s daily life activities and freedom of choice. There may also be restrictions on “daily life activities” to protect the person and others from harm (i.e. not allowing someone to run out in traffic and get hit by a car but instead providing a fenced in yard where the person can move about without being injured). To eliminate options that have rules and restrictions because some people would find those rules and restrictions incompatible with their own needs and desires is foolish.
The person-centered planning meeting should be the place where the individual’s needs and preferences are matched with compatible and appropriate services and living arrangements and where modifications to existing settings and acceptable compromises are determined. Maintaining a full continuum of services and settings is a better plan than eliminating options because some people might find them objectionable.
The proposal states that a setting is not integrated in the community if it is…"Located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment or custodial care; in a building on the grounds of, or immediately adjacent to, a public institution; or a housing complex designed expressly around an individual's diagnosis or disability, as determined by the Secretary; or…Has qualities of an institutional setting, as determined by the Secretary..."
These proposals appear to eliminate HCBS funding for many forms of congregate care for people with disabilities or for any specialized services provided in group settings and designed for people with specific disabilities. It appears that CMS has come to the conclusion that the worst thing that could happen to people with disabilities is that they would have to associate with people like themselves.
Here are just a few of the programs and services that could no longer be provided with HCBS waiver funding:
ICF/MR community resource programs that offer medical, dental, respite, and recreational services to people living in surrounding communities…Harbor House Ministries in Ottawa County, Michigan, that serves people with the most severe disabilities in three 12-bed group homes designed and planned by parents and caregivers with support from a variety of community organizations – care and support includes both specialized services along with appropriate community involvement for each resident… Just Us Club in Ann Arbor, Michigan, a parent-directed afterschool program for students and an activity/respite program for adults, all with moderate to severe developmental disabilities - it is the most popular respite program in the county and provides care for adults for about $6.00 per hour (about half the cost of paying a respite worker to come into one’s own home); a group home in Grand Rapids, Michigan, for high-functioning adult men with autism built on the grounds of a retirement community – each resident has his own bedroom and bath, living independently but together in a supportive environment…a local nursing home that provides overnight respite care for a severely brain-injured man who lives with his family….planned communities in Florida modeled on retirement communities, developed by families who are responding to the waiting list of about 20,000 people with developmental disabilities who receive no services…Wheelchair basketball for people with spinal cord injuries…Group homes designed for people with specific medical problems to help manage the medical condition while providing services for as normal a life as possible…The Community Respite Center in Jackson, Michigan, that provides respite care and activity programs for children and adults at a Medicaid nursing facility -- guests can be accommodated at any level of nursing skill including feeding tubes, medications, and breathing and suctioning treatments…
While there are hundreds of thousands of people with disabilities on waiting lists for services across the country, there is no shortage of ideas for improving the lives of people with developmental disabilities. When CMS deliberately and unnecessarily narrows the choice of options available based on a misinterpretation of law and a questionable ideology, it becomes an impediment to creating a system that can truly meet the needs of the full range of people with developmental disabilities, especially for those who are either not served at all or inadequately served by our current system.