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While seeking attendant services, have you ever been told “We don’t need to authorize attendant services, because your family can provide these services to you informally”? How about “We can’t provide the attendant hours you need because the providers we contract with don’t have enough aides”? Maybe even “I’m sorry, we don’t provide 24 hour services. You have to go to a nursing home for that”? For many of us, these barriers are all too common when dealing with our Managed Care plans, where community living can feel more like a financially based privilege, not a guaranteed civil right.
Under the Disability Integration Act (DIA), all of the aforementioned barriers (and many more) would be rightly classified as discrimination, and thus a violation of our rights. Currently in the U.S. Senate HELP (Health, Education, Labor, and Pensions) Committee, The Disability Integration Act (S.2427), is groundbreaking legislation that guarantees community living, and more specifically community-based long term services and supports as a federally protected civil right.
A critical component of securing this right is the specific prohibitions listed in Section 4, entitled “Discrimination” of the DIA. Some of these prohibitions include:
1. Requiring us to use informal supports such as friends or family members as part of a plan of service.
2. Failing to provide sufficient funding to ensure that we are able to hire and retain qualified attendants.
3. Forcing us to attend a day program as a substitute for receiving attendant services in the home and community.
4. Failing to inform those of us in institutions of our right to return home with community-based long term services and supports (LTSS).
5. Imposing policies, such as cost caps, that prevents us from receiving the proper services we need to live independently (this discrimination is particularly systemic for those of us who require a higher level of LTSS).
For too long, we have been forced into institutions, where every aspect of our life is controlled by a medical hierarchy. When the DIA is passed into federal law, these all too common discriminatory practices will be illegal, and after years of relentless struggle and advocacy, our right to live in the community will finally be affirmed.