People with disabilities volunteering in their community.
It’s hard to have a conversation related to disabilities without the topic moving to the impending cuts in Medicaid. To once again hear that institutionalization (including nursing homes) is being considered rather than Community Integration creates a sense of de ja vous.
Reagan introduced the Medicaid Home and Community Based Services (HCBS) program to help disabled citizens live outside of institutions. We all soon learned that they did more than live. Many thrived and reached levels of independence that few imagined possible.
Just this week a major news network reported that Nebraska was the first state to remove people from Medicaid. Almost 900 people with developmental disabilities have faced funding reductions as identified by interrail, a new assessment software that quantifies a person’s independence or dependency on others.
Indiana recently began using the same InterRAI assessment tool for the annual HCBS waiver eligibility redeterminations. As of this writing, as many as 1,600 disabled Hoosiers receiving Medicaid HCBS waivers are appealing the findings that they do not meet eligibility requirements.
Not so long ago, those with mental illness, developmental or intellectual disabilities, physical disabilities, dementia or just those in poverty, would all be housed in state institutions. Some of my nursing training occurred in just such an institution in Weston, West Virginia.
Healthcare interventions have changed greatly since my college days. At that time there were just a few psychotropic medications available, and lobotomies were still being performed. Life expectancies for those with disabilities were shorter. We didn’t have the early diagnosis tools, knowledge or even surgical interventions to correct many degenerative conditions that we have now. We know so much more now than we did in the early 70’s and before.
Early attempts to move some from institutions to the community without supports often failed. Some ended up in jails or were a part of the homeless population in that community. However, those who were provided with home-based supports, as provided by HCBS waivers, were more likely to have greater success with community integration and improved outcomes. Since the 1960s, the number of residents living in large state institutions in the United States has dropped by more than 90% with less than 1% of those with IDD now living in facilities with 16 or more people.
Why are we implementing a process that is not assuring continuation of those supports? Why are we moving backwards?
“Explanations and recollections aren’t tethered to sequence. Time may move in a straight line, but memory does not.” Yann Martel in Son of Nobody
- Have we forgotten those whose potential was lost in the times of institutionalization?
- Have we reached a point where we accept an algorithm to determine the amount of resources that should be invested in a life?
- Have we forgotten that institutional care has repeatedly shown to cost between four to eight times more than community integration supports (according to the Medicaid and CHIP payment and Access Commission MACPAC)?
WindSwell’s guiding principles affirm that those with disabilities are deserving of a choice-driven life in social settings that are encouraging of individual potential. Recent actions in Indiana, Nebraskaand other states to come put at risk those personal choices of the disabled who are dependent on Medicaid, about where and how to live their lives. Until 2026, those principles were assured by both ADA and the Olmstead v. L.C. decision.
44 states will be using the InterRAI assessment tool to identify Level of Care determinations. There is a process to appeal. We ask that each of you join us in learning more about the process changes. You can support those families who are finding the path of appeals.
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This is not a partisan issue, nor should it be. Since ADA was signed, community-based services have been supported and funded by Republicans and Democrats. It is a principle of our nation that we are assured a path to life, liberty and the pursuit of happiness. For many of those with disabilities, access to the supports of their community as assured by Medicaid waivers, is part of the path.
