I’m a person who holds down a full time job. I also happen to have Cerebral Palsy. I cannot talk, walk, or use my hands to perform daily tasks. Yet, I work from home as Chief Accessibility Officer for Ruh Global Communications. Until recently, my mother has been
taking complete care of me. However, because of aging issues, she has become disabled herself and needs help with caring for me.
Fortunately, I applied for Waiver Home Care Services years ago, which now provides us with needed assistance. Nevertheless, Waiver only provides a limited number of hours of care. Consequently, I, an intelligent productive member of society, may be placed in a nursing home. This has been my biggest fear!! That’s why the passage of the Disability Integration Act is urgent, not only for me but also for millions of other Americans with disabilities who have the right to live at home.
Introduced by New York Senator Chuck Schumer in 2015, the Disability Integration Act (DIA) would ensure that persons with disabilities who need long term care assistance have the choice of remaining at home instead of being forced into an institution. The DIA originated from a report by the HELP committee entitled “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act” (ADA).
Besides guaranteeing independence to adults with disabilities, the DIA also would free loved ones from emotional and financial burden. No longer would they feel guilty about not being able to take care of us and thus compelled to place us in nursing homes. The DIA would not allow state social services to separate us from family members and from the comfort of our homes. Under the DIA, states (Medicaid) and private insurance would pay for home and community-based care.According to the report, the ADA must be amended to emphasize that persons with disabilities have a civil right to stay at home to receive personal care services rather than be institutionalized. This right was upheld in Olmstead vs. LC, ruling that states should remove segregation barriers for us and provide opportunities for full integration in the community. Although the DIA won’t amend the ADA, it will create a civil right law to guarantee our independence. Not only would the DIA prevent individuals with disabilities from being placed into nursing homes, it also would ensure that those who reside in nursing homes are protected under the ADA.
So why wouldn’t such a positive life-changing law be supported? Many Congress representatives assume it would be another huge entitlement program too costly to maintain. Yet, the average cost of home health care, where an aide would come and take care of an individual, is $29,640 a year. Currently, the average cost of having someone live in a nursing home is $90,000 a year.
Another argument against the DIA is that nursing home employees would lose their jobs, many nursing homes would close, and the economy would be dented. Granted, nursing homes would see a drastic change once the DIA passes. However, some nursing homes could be transformed into skilled rehab centers where persons who just became disabled could learn to live independently and may get jobs once they are out in the community. Nursing home employees who might be laid off could find positions in the home healthcare industry, where trained professionals truly are needed. Therefore, the economy will get a boost from the DIA instead of a slam.
Currently, the DIA bill sits in the House waiting to be passed. It has a long way to go before it reaches the President. If we write to our Congresspersons emphasizing the importance of the DIA, write blogs about how it will impact society, and help it maintain a constant exposure on social media; the bill would become a cannon ball gaining force as it rolls to the President’s desk. With so much support behind it, it will become law and give us the independence we deserve.