Secretary Price, Don’t Mess With People With Disabilities' Freedom

Imagine a life where every part of your day is defined, regimented, controlled by someone other than you. Where even basic decisions, like what to eat, where to go, or who to spend time with are denied you. For people with disabilities living in many residential facilities, this is the reality. Basic choices, from decisions about where to live to the opportunity to be intimate with your partner, are denied people with disabilities across the nation.

Many Americans are aware of these sorts of problems and the resulting loss of freedom faced by people with disabilities who are forced into nursing homes and other types of institutions. To address this, disability rights advocates have worked over the last 50 years to bring people out of institutional settings and into the community, fighting to expand Medicaid-funded home and community-based services, also known as HCBS.

In 2013, after decades of effort by activists and federal policymakers, the percentage of Medicaid funding spent on community-based services finally exceeded that spent on institutional care. Many states have succeeded in serving people with developmental disabilities entirely in the community, no longer relegating people with Down syndrome, intellectual disability, and other similar diagnoses to institutions. Others are working towards similar outcomes.

Unfortunately, the mindset of institutionalization still exists, even in community-based settings. A growing body of research indicates that, particularly in larger settings where people with disabilities are clustered together for provider convenience, residents are deprived control over basic choices. To address this, the Obama administration issued a groundbreaking rule in 2014, requiring every state to upgrade its home and community services to ensure that those receiving them had their basic rights respected by 2019.

The HCBS settings rule included requirements that people get a choice of where they live, including the opportunity to pick residences other than group homes and other “disability-specific settings.” It also instructed states to ensure people living in residential facilities were afforded the right to choose what to do during the day, who they invited into their homes, when they ate, and whom they shared a bedroom with. These are the kinds of basic rights that most Americans take for granted — but for people with disabilities, federal intervention was necessary to protect them.

Imagine a life where every part of your day is defined, regimented, controlled by someone other than you.

The settings rule gave every state five years to work with providers and people with disabilities to reach compliance — unfortunately, it looks like that’s not going to happen. This week, President Trump’s Health and Human Services Secretary Tom Price and Center for Medicare and Medicaid Administrator Seema Verma issued a letter to state governments indicating their intent to delay the rule’s implementation deadline, making the full realization of the rights of people with disabilities a dream deferred.

What’s worse, the letter indicated their intent to rollback federal oversight, deferring to state governments as to whether or not particular providers and settings were respecting the rights of people with disabilities trying to live their lives on their own terms. That’s a problem. Basic freedoms like choice, autonomy, and privacy in one’s own home shouldn’t be subject to the whims of state legislators.

This delay by Secretary Price and Administrator Verma threatens the fundamental rights of people with disabilities. It means that people’s freedom is determined based on what state they live in. In 2011, four states — Kentucky, New Hampshire, Vermont, and New Mexico — supported more than 90 percent of all people with developmental disabilities receiving community-based residential services in settings of three or fewer people. In the same year, five states — Illinois, Michigan, New Jersey, New York, and South Carolina — supported fewer than 30 percent of their residents in such settings, relying predominantly on more congregate group home models that restrict the freedoms of their residents.

Tom Price and Seema Verma should realize that the right to live in the community – and make basic choices about one’s own body, time, and home – should be available to every American. This week’s letter sends a message that for people with disabilities those rights are conditional. Americans with disabilities have too much experience having our freedom subject to other people’s whims.

We deserve a full and speedy implementation of the HCBS settings rule. Nothing less than our basic civil liberties is at stake.

Ari Ne’eman runs MySupport.com, an online platform connecting people with disabilities to support workers. He previously served as one of President Obama’s appointees to the National Council on Disability and as the President of the Autistic Self Advocacy Network. He currently advises the ACLU on disability policy and Medicaid.

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Darla Higgins

Someone had to stop this attack on our most vulnerable. Other than that I'm truly speechless at the cold heartlessness shown by this entire bunch of Republicans who are supposed to represent ALL of US.

Michael Hancock

Thank you ACLU for your unwavering support for those of us with disabilities. We will never quit, never give up, never lose hope, and we will overcome.

Anonymous

I work in HCBS funded group homes. Our homes are getting larger and larger- we use to have 3 and 4 bedroom homes, but now almost all of our homes are 5-8 bedrooms. Our day programs can be even worse, with 1:10 or even 1:20 ratios. Many of the ladies I serve have very high needs- they may be unable to communicate basic things, like if they're in pain. They may be unable to use the bathroom independently, or even feed themselves. Many have both a developmental disability and a mental illness- it's not unusual to have a client become psychotic or manic and attack either staff or another client due to their mental state.

We just don't have the staff because the pay is so low. I want to meet their needs. I want to help them make more choices and become more independent. I can't, though, when I'm struggling to just make sure everyone is fed, clothed, bathed, and physically safe.

Anonymous

I used the word bedroom, and want to correct it- I meant bed. Most of our homes have 3-4 bedrooms, with most clients sharing a room, usually in a small twin size bed because there isn't enough room for a full (many of my verbal ladies want bigger beds!). Some homes they're looking at putting 3 people in a room to increase capacity. Often with no room for anything beyond a bed and a dresser.

Rose toye

I have a head injured brother from a drunk driver. Driver in 1975 never convicted.
My brother was supported by my oarents ( whom passse after I stopped working for 10 yrs. To take care of them). Then I took care of my brother for 5 years after going back to work.) He cannot work due to brain injury.. Now he is living with our brother since I lost my fulltime job during a take over. Do not stop people with disabilities from living their lives. I have been in medical field in physical Therapy since 1972 and this administration is a disgrace!!!!

Nora Gainey

Thank you for saying this.

Anonymous

i have a disablity that you cant see. I have schizophrenia. I lived in a group home at one point with about 8 other mentally ill people. We were not treated with respect and most of our decisions about what to eat, when to go to bed, what to do with our day etc were made for us. The disabled and most vulnearable among us should have the same rights as anyone else

Anonymous

Hmmmm, so neocons now have some regrets?

Anonymous

Not every group home is an institution, not every congregate setting is stifling. What's needed is choice with a range of options. Just as we should not go back to institutions for all, neither should so-called independent living be the default for all. I know of too many people who were lonely and isolated in their own apartments where the "community" shunned them after fighting like hell to keep them out.

Nancy Connor

Listen to Ari and families from Colorade and other states and people like me who support peiple with disabilities

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