There are many laws at the Federal and State levels that protect the rights of people with disabilities. Laws protecting our right to access Federally funded programs and State and local programs, businesses, flying, education, housing, and assistive technology, are a few of the most prominent. Two rights that many people do not know about is first the right to receive Medicaid (KanCare) Home and Community Based Services (HCBS) in the most integrated setting. Second, the right to be able to self direct your HCBS in the State of Kansas.
There was a suit filed under the Americans with Disabilities Act (ADA) by attorneys representing Lois Curtis (L.C.) and Elaine Wilson (E.W.) in Georgia. Both women were admitted, treated, and determined ready to move out of the institution, but were confined several years longer than needed. On June 22, 1999, the U.S. Supreme Court confirmed that in Olmstead vs. L.C. & E.W. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act. The Court held that public entities must provide community-based services to persons with disabilities when (1) such services are appropriate; (2) the affected persons do not oppose community-based treatment; and (3) community-based services can be reasonably accommodated, taking into account the resources available to the public entity and the needs of others who are receiving disability services from the entity. The Supreme Court explained that its holding “reflects two evident judgments.” First, “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life.” Second, “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.” https://www.ada.gov/olmstead/olmstead_about.htm
The Olmstead Decision was a big win for people with disabilities across the country. Those of us with disabilities living in our communities already believed we should have the right to live in our homes if we choose, as well as receive services needed to live there independently. But this ruling confirmed our belief and has given thousands of individuals the legal support to enforce their rights to live free rather than confined to a nursing home or institution. So if you know someone who is in a nursing home or institution but would prefer to live in their home and community, this ruling could support them to do so. If they are being told that they cannot move out to the community, they should contact the Disability Rights Center of Kansas at 1-877-776-1541 to help them.
In addition, the second law I would like to make sure you know about is the Kansas Self-Direction law K.S.A. 39-7,100 which passed in 1989. There are a couple of important points from this law that affect people with disabilities in receiving in-home care through KanCare. Individuals who need in-home care or receive attendant care services, or are the parents or guardians of minors at least 16 years of age who need in-home care, shall have the right to choose the option to make decisions about, direct and control the attendant care services received, including, but not limited to, selecting, training, managing, paying and firing of an attendant. Also, providers should include individuals in need of in-home care in the planning, startup, delivery and administration of attendant care services and the training of personal care attendants.
Individuals may choose to not self direct and use agency directed services if you do not want to hire, fire, train your own personal care attendants and if the home health agency can meet your needs. But if you do choose to self direct your attendant care services, as most recipients in Kansas do, it is important that you know your rights and responsibilities that go with it. You should also know that the Kansas Self-Direction law is to protect your right in doing so. Your Care Coordinator is required to include you in planning your services, so be sure that you are involved and that they communicate with you. You have the right to choose which providers you use when you are self directing your services. So your Care Coordinator should give you a form with a list of providers to choose from. Some of you may be a little nervous about being an employer, as you are the person in charge when self-directing your services. It is important that you still stay within the requirements of the program as the employer, but it is also important that you be a good employer that respects your attendants who are your employees. By self-directing your attendant care services, you have a great deal more control over your life.
By Lou Ann Kibbee, Systems Advocacy Manager at Southeast Kansas Independent Living (SKIL) Resource Center.