Tag Archives: deinstitutionalisation

Recommended Reading for Wednesday, 1 December 2010

Happy Wednesday, y’all! I can’t believe the (Gregorian) year is almost over. Here are some things I’ve read lately and found interesting; the usual caveats re:comments sections, etc. apply!

Gimps are HOT!: A powerchair user at an ADAPT action holds up a sign saying 'Gimps are hot! Crips are sexy! We want access too!

Photo of a protester at an ADAPT action taken by Flickr user sissyboystud, creative commons license.

C.L. Minou on The Guardian: Comment is free: Trans people are humiliated by healthcare system

Problems getting prescriptions are only the end part of the process. In the US, most doctors won’t prescribe hormones without a patient having undergone a psychological consultation beforehand. At first glance, who would object? Hormones are powerful drugs that cause permanent changes and a screening process should be in place to make sure that you’re competent to make the decision to take them, right?

Joseph Shapiro at NPR News: Olivia Welter, Other Severely Disabled Adults Win Round in Court Battle

Just weeks ago, the Welters thought Olivia’s nurses would walk out the door when she turned 21. But in late October, the family joined a lawsuit filed by the family of another disabled man who had lost services, William Hampe. The state of Illinois then agreed that it would continue the level of services that Olivia had been receiving while the case goes through the courts.

Dahr Jamail at Socialist Worker: Poisoning the Gulf’s residents

“I have pain in my stomach, stabbing pains, in isolated areas,” Rednour added. “The sharp stabbing pain is all over my abdomen where this discoloration is, it’s in my arm pits and around my breasts. I have this dry hacking cough, my sinuses are swelling up, and I have an insatiable thirst.”

Rednour’s recent problems are a continuation of others that have beset her for months, including headaches, respiratory problems, runny nose, nausea and bleeding from the ears.

John Moore at The Denver Post: Oh, the disabled can pack a punch line (note, as you can see from the title, questionable language usage abounds in this piece and it also includes reclamatory uses of slurs like the r-word)

“Like many marginalized and disenfranchised populations, there is reclamation of power that goes with being able to take words that have been used pejoratively and use them to make people laugh,” said Hill. “While I do think the primary purpose of ‘Vox’ is entertainment, it also serves the secondary purpose of advocacy.”

But furthering understanding of the disabled, she said, requires an audience not made up entirely of disabled people.

“Like most movements, if you continue the conversation only among yourselves, you’re not going to get very far,” she said. “Women, for example, can talk about ending sexual violence as much as they want, but until they have as many male comrades in the fight with them, it’s not going to stop.”

Sharon Brennan guest posting at Where’s the Benefit: The Government Is Implicated In Creating Negative Attitudes To Disabled

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed,  “75% of claimants are fit to work“, and carried on: “Tough new benefits test weed out the workshy”.

A Victory for Deinstitutionalisation in Georgia

There’s been a significant push towards deinstitutionalisation in the United States over the last few years, in no small part due to the Olmstead decision, a major ruling by the Supreme Court that I discussed in a bit more detail here. Short version: Unnecessary confinement of people with disabilities has been deemed a civil rights violation. As a result, the Department of Justice as well as a number of disability rights groups have been suing in a number of states to get people out of institutions.

In Georgia last week:

A sweeping agreement this week between the Justice Department and the state of Georgia highlights an aggressive new campaign by the Obama administration to ensure that people with mental illness and developmental disabilities can get services in their communities — and not be forced to live in institutions.

As part of the accord, Georgia agreed to specific targets for creating housing aid and community treatment for people with disabilities. Those with disabilities have often cycled in and out of the state’s long-troubled psychiatric hospitals in the past. The state said it will set aside $15 million in the current fiscal year and $62 million next year to make the improvements. (source)

This is huge, and will get more help to people who need it in Georgia. The DOJ has been on fire this year with Olmstead-related cases, and the Obama administration has been a major player as well when it comes to pushing the DOJ to pursue deinstitutionalisation and more community-based services for people with disabilities. This is often framed as something ‘too expensive‘ for states to afford, which is I guess a nice way of saying ‘your life just isn’t worth that much to us.’

For people struggling to stay out of institutions and stay in the community, for people in the community without adequate care who are facing the possibility of institutionalisation because they don’t have options, and for people in institutions who want out, legal cases like this recent one in Georgia are huge. Potentially even life and death. It’s particularly galling that many states cling to the ‘too expensive’ cloak when organisations like ADAPT have documented that community based services are actually less costly; yes, it’s actually more expensive to force people into institutions than to let them live in their communities and provide them with appropriate assistance.

The agreement focuses on moving people with developmental disabilities out of institutions into community settings, where they can be closer to their community and family. There are 1,800 people in state mental hospitals, 711 of whom have developmental disabilities, which are genetic disorders that cause cerebral palsy, autism, Down syndrome. Under the agreement, the state will stop admitting people whose primary diagnosis is developmental disability into state hospitals by July 2011, and instead place them directly into community services.

Gov. Sonny Perdue said in a statement, “I am confident that we finally have an agreement that moves us towards our common goals of recovery and independence for people with mental illness and developmental disabilities.” (source)

Another important aspect of this agreement involves providing interventions to people at risk of institutionalisation, preferably before they reach the point of needing it. This is key; it’s not enough to simply change the way people are processed when they start interacting with the system, but to identify community-based needs and fill them before those people end up needing emergency care. Early diagnosis and supportive care is an important part of a programme designed to limit institutionalisation, by keeping people out of institutions in the first place.

This case was filed in part to respond to a series of revelations about horrific abuses in Georgia’s institutions, with The Atlanta Journal-Constitution playing a key role in the unmasking of systemic abuse and other problems. What this case represents, in addition to victory for people with disabilities, is also a victory for the free press. The paper’s decision to cover this issue led directly to more public attention and an outcry, and that resulted in positive change for disabled Georgia residents.

Too often, people with disabilities are covered indifferently in the news or set up as figures of tragedy rather than human beings with their own lives and autonomy and needs. It’s very rare to see one article discussing abuse of people in institutions, let alone to see a series of articles, including investigative journalism, delving deep into this issue and presenting information to members of the public.

I wish that more papers around the United States and in other regions of the world were doing this, because too often I encounter the attitude that institutionalisation should be considered the first option, and that ‘those people’ (you know the ones) would just be better off in institutions. People are routinely shocked when I provide statistics about abuse in institutions, and they shouldn’t be. The fact that they are is indicative of the paucity of coverage disability issues receive in the media.

So, When Will You Have the Money?

In New Jersey, Disability Rights New Jersey is suing to demand that the state deinstitutionalise almost 2,000 people with developmental disabilities. The advocacy group is arguing the suit on the grounds that the Supreme Court has ruled in favour of deinstitutionalising people with disabilities and allowing us to live in ‘the most integrated setting’ possible; i.e., that we have a right to community-based care. This was established in Olmstead v. L.C., a landmark case for disability rights. In 2009, on the 10th anniversary of the decision, President Obama actually launched an initiative to more actively enforce Olmstead.

This seems like an especially timely matter this week as ADAPT protests in Washington, DC. These protests have gotten essentially no coverage in the media or anywhere else, despite the fact that they deal with some very critical issues. Forcible institutionalisation still happens, it’s a serious problem, and we continue to fight for the right to live in our communities, among our friends and family. Housing discrimination is another major obstacle we encounter; Mia Mingus is documenting her search for accessible housing in Berkeley, widely regarded as a very disability friendly city, on Twitter, and the results are frustrating:

“Well, I mean, it’s not that many stairs. My grandmother’s handicapped and she can do it.”

“Does she really need to be able to get her wheelchair into the bathroom?”

“You’re helping her? Ha. You look like you can barely walk yourself.”

I regularly encounter pushback when it comes to the idea that we belong in our communities, not in institutions. Appealing to basic humanity doesn’t seem to work, and neither does pointing out the economics. It’s cheaper to provide community-based care than it is to warehouse people in institutions. Saying that needless institutionalisation is against the law doesn’t seem to have much of an impact either.

A similar case recently came up in Florida, where Michele Haddad sued for the right to community-based care and won. Haddad was backed by the Department of Justice, which has been cracking down on enforcement of Olmstead and fighting for the rights of people with disabilities in the United States to live in our own communities. When we talk about unnecessary institutionalisation and forced institutionalisation, cases like hers come to my mind; she was effectively told she had to live in an institution if she wanted to get care. So, yeah, she could have ‘chosen’ to do so, but this clearly would have been a false choice, and it was also against her expressed wishes.

So, what’s happening in New Jersey?

New Jersey is too broke to move 1,850 people with developmental disabilities out of institutions in the next five years, so a lawsuit demanding it do so should be dismissed, an attorney representing the state said [yesterday].

Oh. The cost argument comes up a lot when it comes to disability rights. Everything costs too much, whether it’s making a business accessible or providing people with community based care, even when people are provided with evidence to the contrary, like a demonstration that meeting legal obligations (and doing the right thing) will actually be lower cost than the system currently in use. People say it ‘costs too much’ and ‘maybe later’ and we are expected to wait, and we do, until we realise the money’s never coming.

“Every state says ‘we don’t have the money now,’” said Samuel Bagenstos, a deputy attorney general from the U.S. Justice’s Department’s civil rights division.

According to the department, he said, “It’s $70,000 cheaper to serve a person in the community’’ than in an institution. “The state would save money because they could close a wing, a floor, a building.’’

The DOJ is on the case, which is good, because making a federal case (literally!) out of these things is difficult without either deep pockets, or the backing of the federal government. The Civil Rights Division is supposed to represent the government’s interests in civil rights cases and it’s very exciting to see it taking a more active role in disability rights cases.

The story in New Jersey gets better, though. You see, the ‘we can’t pay for it’ defense was actually the second defense presented by the state in an attempt to get the suit thrown out. What was the first? I’m glad you asked.

…that the state cannot be sued and the 20-year-old disabilities act violates states’ rights and should be declared invalid.

This defense was thrown out, which is a very good thing, because we do not want the Americans with Disabilities Act being deemed invalid on the grounds that it violates states’ rights. That would be very, very bad. The ADA is one of the primary mechanisms of enforcement for disability rights in the United States and numerous gains we’ve made legally and socially hinge on this piece of legislation. By making it clear that the sovereign immunity defense won’t fly in this case, the judge also laid the groundwork for throwing out this defense if people try to use it in other states in the future.

The case in New Jersey will proceed to trial, despite the best efforts of the state. The only logical verdict seems clear to me and hopefully it will seem clear to the judge as well.