Wednesday, December 7, 2016

ACTION: Call to oppose the 19th-century cures embedded in the 21st Century Cures Act

Today a huge omnibus bill that reflects the worst of American lawmaking is going to move through the GOP Congress, probably with wide bipartisan support, and then will be signed by the president. It surely has many perfectly good things in it, but is intended to make it easier for Big Pharma to test drugs, restricting the FDA. It's a splending "No Lobbyist Left Behind" act, the kind of thing Congresses love to pass quietly in December with a lame duck president.

Yes, I'm not a fan. Call your Senator. Do it today. I put a script at the bottom for emails/calls (but calls work best).

Worse, the bill acquired some of the language from the so-called Murphy Bill, a piece of legislation designed to make involuntary committment easier for caregivers of people with mental health conditions. This is, as I wrote about a year ago, the wrong way to go about it.
“This is out and out promotion of irrational prejudice based upon disability,” Mike Bachluber, Co-Chairperson of National Council on Independent Living ADA/Civil Rights Subcommittee, told me about the bill. Robert Bernstein, president and executive director of the Judge David L. Bazelon Center for Mental Health Law, said that Ryan’s bill is not only “misguided” but “fails to address the real problems in the mental health system.”

We do have plenty of problems in that system. Bethany Lilly, a policy attorney at Bazelon, told me that right now the system has substantial gaps in services, and H.R. 2646 would just pour more money on the most coercive elements of how we respond to people in crisis: court-mandated treatment and asylums. Instead, she said, “We need to invest in intensive community-based services that people need,” such as access to providers, supported housing, assertive community treatment teams that help individuals live in a community and many other services intended to help people from getting into crisis in the first place. Such services are both cheaper and more effective than institutions or forced medication. But they also require embracing the principles of inclusion and accommodation.
Instead, the Murphy-approach is to institutionalize. Here's a piece from NCIL (National Council on Independent Living) on opposition to Mental Health Provisions.
The inclusion of language from H.R. 2646 in the 21st Century Cares Act will be incredibly dangerous for our community. While some of our concerns with H.R. 2646 were addressed prior to its June passage, the Murphy Bill is still harmful to people with disabilities. The language related to mental health that is included in H.R. 34 still promotes institutionalization, still increases funding for involuntary outpatient commitment, and influences new HIPPA rules to lessen privacy for people with psychiatric disabilities. It is important to note that the bill pays for more institutionalization of children by requiring states to use Electronic Visit Verification systems, which can make people who use personal care or supportive home care prisoners in their own home. We cannot let this dangerous language become law!
Some coverage of 21st century Cures:


 I called Senators Kirk and Durbin in their Chicago offices yesterday. Call your Senators today. Here's a script written by a friend who did not want to be named.
My name is [your name]. I am a constituent of Senator [Senator’s last name]. I am a [your relation to disability community]. I am calling to ask Senator [Senator’s last name] to oppose the 21st Century CURES Act.

The bill has mental health provisions that will hurt people with mental illness by increasing crisis care in hospital settings. Little data exists on the quality of crisis care in these settings. People with mental illness should get community-based crisis prevention to have a better quality of life.

The bill also provides for an electronic verification system for people with disabilities who use service providers to help with their needs. The verification system only works from a home landline, and it will hurt many people with disabilities’ ability to move throughout the community. This will impact their quality of life.

Thank you for listening. I hope the Senator will consider my concerns, and help keep people with disabilities out in the community by opposing the 21st Century CURES Act.

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