The Health Care Debate and People with DD

The news on proposals to "Repeal and Replace" the Affordable Care Act (Obamacare) have been disturbing, to say the least. Potentially radical changes to Medicaid and eventually Medicare, the availability of health insurance, and how it will be paid for are being rushed through Congress apparently without due consideration for the effects on our most vulnerable populations, including those with intellectual and developmental disabilities. 

Couple that with a windstorm that swept across Michigan and knocked out electrical power to 800,000 customers in Southeast Michigan where I live, and you can imagine how difficult it has been for me to know where to start in making sense of either crisis . The best commentary I have read on the health care debate comes from the VOR Weekly News Update for March 10th, 2017:

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VOR and YOU: Health Care

Much has been said about the recent "Repeal and Replace" activities in Congress. VOR is very concerned about this as well. We have people on both sides of the aisle, and we try not to let our personal views on some issues get in the way of the issues that we have in common, the best interests of our loved ones with I/DD. We all know that the system that preceded the ACA was untenable. We all agree that there are problems with the ACA. but that some aspects of the act should be preserved. We may also agree that the current process of replacing the ACA with the AHCA has not been a smooth or reassuring one.

So what do we know? What can we agree on? 

To begin, we know that there is not enough money to properly deal with the needs of everyone with an intellectual or developmental disability. There are people on waiting lists, many of whom have been on these lists for over a decade. We have people who are receiving services that fall short of their needs. As a result, we do not have a unified community, but one in which each of us is trying to protect what we have or else trying to get what we can by taking from someone else. There is not enough to go around, yet neither party is proposing increasing the amount of money to be spent on the I/DD population.

Second, we see that not enough money is spent to provide long-term caregivers a living wage. As the minimum wage rises for many workers, many direct-care professionals are being left behind. We need to make sure that we have a well-trained, responsible, and loving workforce to look after the needs of individuals with I/DD. We can only maintain such a workforce by giving them wages that are fair compensation for the services they provide.

Third, we know that a good portion of the money that is in the CMS [Centers for Medicare and Medicaid Services] budget goes is being misspent.We believe that the best way to spend this money is make sure it goes directly to care and related services. Far too much of it goes to agencies and programs that lobby against others in the community, to P&A's and DD Councils that often spend these funds working against the interests of some in order to promote ideologies of integration and one-size-fits-all solutions that completely ignore the needs of many of the most severely disabled.

Finally, we know that choice is important to people with I/DD and their families and guardians. We believe that the I/DD population is diverse, and that their needs are too diverse to be met by any simple solutions. Our loved ones are individuals. No two are alike, and while some have similar problems, they don't always react the same to any one given treatment. We believe that residential choice in all forms is vital and we believe that individuals need a variety of employment options, that competitive, integrated employment, sheltered workshops, day programs, and farmsteads are all vital parts of a healthful and productive occupational platform. And we know that with choice comes responsibility - the responsibility to maintain each facility or program to maximize its efficiency and effectiveness, while providing a safe, comforting environment to the individual.

There are no easy solutions being proposed that would solve our health care crisis. We have a complex and underfunded system, and there will always be some people who gain and some who lose. Whatever comes in the months ahead, we know that we must continue to speak up for the needs of the I/DD community, to emphasize the true meaning of Olmstead, and to find political leaders who are willing to help us in our cause.