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Moving Out of the Big "D" Tent to Advocate for Healthcare

The recent bill to repeal the Affordable Care Act failed in the U.S. Senate so all of us with disabilities can breathe a sigh of relief, right?

Of course not.

We all know that even though the recent healthcare bills did not pass in their current states, the issue is not one that will disappear quickly in light of our new president’s promise to repeal and replace Obamacare and a Republican-led Congress seemingly intent on cutting Medicaid.

With recent political change there has been a lot of talk about reducing spending in the federal government. Typically, when the Republican Party is in power, they aim to reduce federal spending, believing that smaller government is best. Since the Republicans are currently in power, it is no surprise that once again, reductions are on the table and that Medicaid is one of the primary federal programs being discussed.

As of 2014, according to, $80.6 billion dollars was spent on Home- and Community-Based Services, much of it for those with severe disabilities who require aide care to live independently in their communities. In many cases, we are talking about people with intellectual and developmental disabilities. It is no wonder, therefore, that talk of Medicaid changing to block grant is scaring the majority of the developmentally disabled advocacy community. Publications such as Disability Scoop and others have published headlines like “With Talk of Medicaid Changes, Waiver Services May Be at Risk” and “5 ways President Trump's Agenda is a Disaster for People with Disabilities.” While these headlines capture the heart of most arguments from the disability advocacy community, I’d like to propose a different approach to advocating for the services we need to live independently.

While it's definitely scary to consider that Home- and Community-Based Services rely so heavily on a program that will potentially be radically transformed by this administration and Congress, maybe this crisis can be used to highlight an even greater one – that our governments cannot seem to abide by budgets. With block grants, states would receive a finite amount of funding versus the current per capita match for each person eligible for Medicaid, which they would then have to use more effectively. Families have to do this. Businesses do as well. They don't have an ever-growing source of funding depending on their needs and have to budget to make ends meet. In theory, why should a state or nation be any different?

According to statistics from the Social Security Administration, in 2015 there were over 80 million people on disability, this included people who had developmental disabilities like myself but also included people who were depressed, had injured their back, etc., many of whom receive their insurance through Medicare versus Medicaid. I’m not denying that there are other types of disabilities than just developmental, I’m just suggesting that those like me who have a developmental disability and our allies should raise the following question, why are we always gathered together under the big “D” tent when the circumstances of our disabilities vary so widely? Many times, it is good to come together as a big "D" disability community; but perhaps, when it comes to significant benefit changes like the ones proposed, those with developmental disabilities should focus their advocacy efforts more narrowly and speak out as a minority within a minority.

Perhaps, advocates for persons with developmental disabilities need to speak out more strongly among themselves and with decision makers against Medicaid and Medicare abuse. If we do better at eliminating inappropriate or wrongly allocated Medicaid and Medicare funds to individuals who do not need them, more money can be spent on those that do. Why when there are discussions about cuts to Medicaid do law makers not put their political agendas aside and realize that those using the Home- and Community-based Services waiver, 24.1 million people according to, need the services to live independently and should not be victims of the fat trimming process. If one really wants to trim the fat, they should investigate those who abuse the system.

Perhaps, developmental disability advocates should not only be concerned about cuts to Medicaid, but should also be concerned with how they are looked at as numbers within numbers, rather than as people who need basic supports to live like everyone else.

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