Thursday, January 8, 2009

New Jersey Proposal to Close Five of Seven Institutions

Photo of Louis Greenwald

(Updated 8:03 PM)
A New Jersey Assemblyman and Budget Chairman, Louis Greenwald, a democrat from Camden (pictured on right), is proposing to close FIVE of the seven state institutions for people with developmental disabilities. Can the other two be far behind? I hope not. His proposal calls for them to be closed within five years, which seems longer than it should take, but at least it's a plan. The money now spent on them would be used for community housing. Hallelujah!

According to a posting by the New Jersey Star-Ledger's reporter, Susan K. Livio, Greenwald says there are compelling moral and economic reasons to "radically restructure" the way the state spends money on people with developmental disabilities. This is one of those cases when throwing money at the problem makes it worse. Big bucks mean maintaining prisons for people with disabilities.

It's becoming clearer around the country that incarceration is not cost effective. Even the prison system is moving to house prisoners in their own homes. The Natchez Democrat newspaper did a cost comparison between incarceration and in-home house arrest. Originally designed to reduce prison overcrowding, officers say the program has another important benefit: It is cheaper than other forms of incarceration. They found that the cost to house a prisoner in a county jail is approximately $22.21 per day; in a work center, $33.69; in a restitution center, $23.53; and in the Home Supervision Program, $6.46 per day.

Greenwald said the state can no longer afford to support seven institutions, where it costs about $227,000 to house EACH of their 2,900 residents. He estimated community care would cost less than half of that amount. That is $658,300,300 annually.

"We are warehousing human life," Greenwald said January 27, 2008. "We pride ourselves on being a progressive state in health care and science." Other states have closed a total of 140 institutions, and New Jersey has not closed one in 10 years.

According to the article he is sure that the state's labor leaders, numbering about 8,000 at these institutions will oppose the measure. Don Klein, executive vice president for Local 1040 Communications Workers of America, said the bill appears to be a stunt to save money. Klein's position is a short-sited and regressive. Each individual will leaving an institution will still need in-home services. There's no reason those workers laid-off at the institutions could not transfer to being in-home workers and should not have union representation. (See Shiva and my comments below, for a clarification of this paragraph.)

He also anticipates that some parents and family members how have relatives in these institutions will who prefer the around-the clock care provided by the developmental centers. Being a parent, I understand the concerns they face; however, the concerns of the parents should not interfere with the independence of their adult children.

New Jersey's State Human Services officials say there are roughly 2,400 people living at institutions who are willing and able to move to community housing. Under the bill, two centers -- one in north Jersey, the other in south Jersey -- would remain open to accommodate the people who want to stay. If it were you... which would you prefer? If available community options were available, those two remaining facilities will also be empty.

Joseph Young is the executive director for Disability Rights New Jersey. The agency sued the state on behalf of people who want to leave institutions and 8,000 others living with families who are on a waiting list for state-funded housing, called the bill "an incredibly ambitious program. Whether they can logistically do it I have no idea, but clearly they are headed in the right direction," Young said.

C'mon Mr. Young! way to stick your neck out. People are languishing in hell holes. Let's be "incredibly ambitious."

One can only hope the forces for disability advocates will succeed in their efforts; also that other states (are you listening Illinois?) will follow their lead quickly.

If you want to become involved in creating more community choice options for people with disabilities in Illinois, contact the Campaign for Real Choice, Chicago ADAPT, or your local center for independent living's Community Reintegration Program. Other states have similar programs, but I am not familiar with them... do a little Google research to find them.


shiva said...

"There's no reason those workers laid-off at the institutions could not transfer to being in-home workers and should not have union representation."

There is a very good reason - the attitudes trained into these workers and reinforced through years of working in institutions, which will in many if not all cases be impossible to retrain out of them.

If disabled people are moved out of institutions into supposedly "independent" living, but the workers who assist them are the same ones who worked in the institutions, and still treat them the same way, then all that has happened is a big institution getting split into many small ones. It would be like a formerly colonised country which has just achieved independence from a colonial power retaining all the colonial administrators, governors and police force.

The power relationship between an independent-living disabled person and their personal assistants is the exact opposite of that between a disabled person in an institution and the workers there. Very few of those who have worked in institutions would be able to make so profound a transition - from a position of total authority to one of (what they would see as) subservience to the person they previously had total authority over - easily.

Most of the people i know who employ personal assistants deliberately specify that they will NOT employ people who have worked in or been trained by the "care" industry. Many other disabled people i know choose to struggle at personal care tasks without any assistance at all, despite consequently putting their health at risk and living in social isolation, because they cannot find PAs who don't have the "carer" attitude or, due to past experience of institutions or care agencies, cannot disassociate the concept of being assisted from that of submitting to another person's authority over basic life decisions.

IMO we cannot emphasise too much that being a PA is a *totally* different profession and relationship to being a "carer"...

Big Noise said...

You're absolutely right, it is a totally different profession, different goals, different orientation and different power structure. I think though, some people can be retrained, those who cannot should not be let near a person with a disability.

But, also my point was that unions can offer representation to home care workers, just as they can institutional workers.

Thanks for keeping me on my toes, Shiva.

shiva said...

The one group who i think could be retrained are those who went into the institutional care job naively, thinking that they were doing genuine good (or even accepting that it's a bad system, but still thinking they could change it from the inside), and then have their eyes opened to the reality by experiencing it. For a *very* brief period, i was one of those people - but, like me, most such people don't last longer in such jobs than a couple of months... or those that do last longer end up corrupted, their initial ethical doubts pushed to the back of their minds by the normative sledgehammer of the absolutist, paternalist "care" ethic (although in some cases, engaging them in argument on the subject can bring them back).

Some of course do go into or stay into those jobs, like any "unethical" jobs, out of economic necessity or lack of choices, and while it might be possible or impossible to "un-train" someone who has already worked in such a job, having disabled people in the community and recruiting for PAs at a better wage and working conditions than those "carers" get in institutions (which is often true) may prevent people from going into those jobs in the first place (and someone who could have been brainwashed into a "carer" ideology ends up with a social model one).

Unions... i'm not sure, i'll have to think about that. I think the trade union paradigm of employer/employee relations arguably sort of breaks down when it comes to the very different power relations of PA work... anyway, i'm going to post about these issues myself soon...

Big Noise said...

I know there is often controversy about collective bargaining, unionism and personal assistants on one side and people with disabilities on the other. I believe the two can co-exist in harmony.

Let's face it both groups are at the bottom of the socio-economic scale. I don't think we should have to both fight for crumbs of an already eaten pie.

If we can raise the standard of living for personal assistants (ie: living wage, healthcare)we're likely to be able to attract and retain more dedicated workers who will stay on their job longer. That, in turn, will provide more stability and security for people with disabilities. We then also have allies in our fight for more PA hours, a higher standard of living, quality of life, etc. It's a win-win (although I hate the term.)

Michael said...

In a former life I was a union representative/organizer for workers in institutions. Currently, I am the parent of a child who is a union member in a state supported institution.
There are some obvious truths. People who work as PAs or care givers bring with them the same prejudices as the dominant classes do.

I have met very few workers who were not consciously trying to take good care of the people in their care. However, low wages, poor working conditions, lack of respect, long hours, disregard for the well being of the clients by management leads to the same alienation from the work place that affects auto workers or anyone else caught up in capitalist relations of work.

My daughter is a product of the Independent Living Movement. It is not easy for her to maintain her orientation as an advocate for people she is paid to change their diapers while knowing how exploited she herself is by management.

One other question to investigate is what the relationship is between the massive power of state and privately owned institutions in the upholding of the capitalist system. Make no mistake about it...the movers and shakers in the world of institutionalizing PWDs are not mom and pop operations. They are part and parcel of the conglomerates that control our much of our lives.

shiva said...

Trade union activism, at least the way it works here in the UK, presupposes an antagonistic relationship between employer and employee - one of exploiter versus exploited, one where "win-win" is by definition impossible.

The only way that kind of activism could make sense with regard to PA work, IMO, is if the government/local authority providing the money is seen as being in the place of the employer, and then disabled people and PAs would be together on the same side of the equation. If the individual PA employer is seen as in the place equivalent to that of a corporate employer, then that would be putting the workers' rights of PAs in direct antagonism with the human rights of disabled people (and also wouldn't even make sense from an economic point of view, as individual PA employers don't usually have much control over how high an hourly wage their PAs get, constrained as they are by what the welfare state grudgingly gives them).

"My daughter is a product of the Independent Living Movement. It is not easy for her to maintain her orientation as an advocate for people she is paid to change their diapers while knowing how exploited she herself is by management."

The point is, there shouldn't *be* "management" - the only "manager" of a PA should be the disabled person employing hir. In the group home i tried working in as a "support worker" (the euphemistic job titles used by the agency that ran it changed on something like a monthly basis), i was accused of "neglect" and hounded out of the job by management for merely talking to a disabled person about what ze wanted to talk about (long story and one that some day i'll blog about, but it was one of the key experiences leading to my own identification as a disabled person).

There are structures it's impossible to do genuine good in. In those structures, people with genuinely good ethics trying to work within them can actually do more harm than good.