SearchBy: Nicole Jorwic, Director of Rights Policy, The Arc of the United States
During the recent fights to save the Medicaid program from devastating cuts and fundamental restructuring, the home and community based services (HCBS) that individuals with disabilities and their families rely on were in greatest jeopardy. These services include everything from residential supports, day supports, and employment services, to personal attendant care. This is because under federal Medicaid law, HCBS are OPTIONAL while other services such as institutional services are MANDATORY. So if the cuts included in the recent health care bills would have made it down to the state level, HCBS would have been the first thing on the chopping block. This new reality would have been devastating to individuals and families.
Those HCBS dollars are the ones that, over the last several decades, have funded the desperately needed shift from institutional placements and segregated services for individuals with disabilities to a full life in their communities.
I have been lucky in my life to be a part of a community that involved all individuals in every aspect of the community, including my brother Chris who has autism. Chris is 28, lives in Illinois and receives Home and Community Based Services through the Medicaid program to remain in the same community where he has lived his whole life.
Not only do HCBS benefit the individuals with disabilities who receive them to stay in their community, it benefits every community member. Because of the services that Chris receives he is able to live in his home, do things that he chooses during the day out in the community, interacting with people who do not have disabilities, and gets the support that he needs to communicate through typing. Chris has a full life, and Medicaid HCBS have made that possible. However, it is never lost on me that if Chris had been born 20 or 30 years earlier, his life would most likely look very different because of his significant level of needs. Chris would have languished in an institution, away from his family, friends and his COMMUNITY never learning to express his wants, insights and amazing sense of humor. This knowledge is why I feel so passionately about making life in the community a reality for all individuals with disabilities, no matter their level of need.
The disability community showed our strength during the fights to protect Medicaid, and now we must rise up again to show the importance of ensuring that HCBS dollars are spent in the community and not in settings that isolate individuals from interacting with all parts of their communities. We need to show that life in the community is possible for ALL! The best way to send that message is to share stories about why community matters in YOUR life, and what your life looks like in the community.
Chris has already written his own story and submitted it, please take a moment to do the same. You can enter your information here. We will use these stories to show the need to increase the investment in HCBS dollars and to ensure that capacity is built to support every individual in their communities