Price as HHS secretary terrifies disabled and their allies

For Americans with disabilities, the Affordable Care Act, President Obama’s signature healthcare reform law, has been a literal lifeline, enabling them to access private health insurance that had previously been denied under the dreaded pre-existing condition exception and expanding coverage under Medicaid.

That’s why President-elect Donald Trump’s nomination of Tom Price to serve as secretary of Health and Human Services is so frightening to people with disabilities and their allies.

{mosads}Trump — like all the other Republican presidential candidates — campaigned for months on a promise to repeal the Affordable Care Act (ACA). Price has been making that promise for years. Repeal would have a profound negative impact on millions of Americans who have benefitted from having health insurance since the law’s passage. But it would be a particular blow to Americans with disabilities because the law included a special provision called Community First Choice, which incentivized states through Medicaid to provide services that allow people to live at home or in community-based settings rather than in institutions. 

The provision was the United States’ belated embrace of a feature of the landmark Convention on the Rights of Persons with Disabilities (CRPD), adopted by the United Nations on Dec. 13, 2006.  When it was passed, the convention marked a paradigm shift in the disability field globally. It recognizes the inherent dignity and equality of all people, including the right of people with disabilities to live and be included in the community on an equal basis with others — a right that can only be realized if appropriate services are provided in communities and are accessible to all who need them.  

Although the convention has been the fastest ratified human rights treaty in history, the United States, through Congress, has never endorsed it. Doing so would bind the country legally to its mandates, something Republican legislators have long opposed. We did not ratify under President George W. Bush, whose administration negotiated the treaty, and we did not ratify under President Obama, who nevertheless signed the document.

After all, the United States has the Americans with Disabilities Act (ADA), which predates the convention by 16 years and also guarantees rights for people with disabilities. But the country has long fallen short on the issue. Despite the ADA, the Affordable Care Act, and a 1999 U.S. Supreme Court ruling holding that people with intellectual disabilities should be able to live in community settings rather than institutions, institutionalization is still often the norm in this country 

In my practice as an attorney more than two decades ago, I regularly represented individuals who had been confined to institutions that had stripped them of the rights — even choices as simple as picking out what to wear had been eliminated for them. And this practice continues, despite the best efforts of the Department of Justice under President Obama, which prioritized cases challenging the unnecessary segregation of people with disabilities.  

Will Trump continue this work? We’ll have to wait and see, but his selection of Price does not inspire confidence. Trump’s influence on people with disabilities will also extend beyond U.S. borders. As president, he will oversee the budget of United States Agency for International Development (USAID), which spends billions each year on development projects around the world, including those that promote the rights of people with disabilities.  

In 1995, I left the United States to work on behalf of people with disabilities in countries that had recently emerged from behind the Iron Curtain. Many of those countries are making real progress on disability rights. In Croatia, where my organization has collaborated with the government to transition people with disabilities from long-stay residential facilities to community-based housing and support, large-scale reforms are underway 

Eight institutions are — on their own initiative — converting themselves into community-based service providers. I recently worked with a visually and hearing impaired young man with severe intellectual disabilities who had been confined to a so-called “rubber room” for 30 years — ever since he was left at the institution by his parents. Now he lives in the community with the support he needs, rides horses, and frequents cafes.  

Croatia was the third country in the world to ratify the convention in 2007. The European Union, the supranational body to which Croatia belongs, ratified it three years later, giving renewed momentum to disability rights on the continent. We have focused our advocacy efforts in Europe on ensuring that EU structural funds, or monies designated to improve parity among states, are not illegally spent on building or renovating institutions for people with disabilities, but rather invested in the development of community-based alternatives.  

We can keep doing this work without the United States as a party to the Convention on the Rights of Persons with Disabilities. And we will. And the United States could improve its own record on disability rights without the convention. And it certainly should. But as a major player on the global scene, it is critical for the United States to set an example by ratifying this convention.

At the very least, the failure to do so is a missed opportunity for the U.S. to join together with other countries on basic fundamental rights for some of the most marginalized people in the world. Under the leadership of a President Trump, I fear, this failure could become more than symbolic.

Judith Klein is director of the Mental Health Initiative in the Public Health Program at the Open Society Foundations.

The views expressed by contributors are their own and not the views of The Hill.