Thursday, July 16, 2009

Work: A Civil Right or A Choice?

I guess I should feel fortunate that my two adult sons will never be able to do anything that resembles work. The most rabid ideologues who insist that even the most profoundly disabled citizens can and should work at a paying job, tend not to spout this kind of rhetoric around people like my sons. How foolish to talk about a person who can't speak, feed himself, wipe his own nose,and who needs a diaper change every couple of hours as a good candidate for a paying job.

On the other hand, I know people whose sons and daughters can and want to work. Their children are in the heartbreaking position of having the hardest time proving themselves worthy of employment when times are good and the first to be layed off when times are tough.

In Washington state, as in Michigan, the idea of paying jobs for everyone is part of the move toward inclusion that has exceeded the bounds of common sense. An article in the Seattle Weekly, Developmentally Disabled, Unable to Speak...Ready to Work?, reports on the state's 3-year-old policy that encourages all developmentally disabled people to find paid employment.

The article begins and ends with the often frustrating task of an employment consultant for a non-profit organization that provides training and support for integrated employment of people with disabilities. He has a case-load of 12 people with severe disabilities for whom he attempts to match their skills to paid employment. His first successful job placement was in January 2009 but it only lasted three months. Another job lasted for an hour and other job possibilities evaporated with hiring freezes.

The article recounts some interesting personal stories about the push for integrated employment and reveals a healthy skepticism by parents. As one parent says, "It's their agenda. It's not my daughter's agenda."

Washington state has decided that all activities it funds for developmentally disabled adults under age 62 will be related to finding and keeping jobs. Sheltered workshops, that have worked well for some and not for others, are being phased out. Recreation programs are no longer being offered as an alternative to job programs except for a limited number of people (35) who have been granted an exemption by the state.

Ray Jensen, the director of King County's Developmental Disabilities Division sees employment as a civil right and further claims that any program that congregates developmentally disabled people is no longer desirable or allowable: "I can show you law after law that says we can't segregate people."

I do not have the foggiest idea which "law" he is referring to, but it must be the same imaginary law that advocacy groups in Michigan cite when they claim that the existence of residential facilities, group homes, center-based school programs, and other programs designed specifically for people with developmental disabilities violate the civil rights of the people they serve.

Phasing out and eliminating costly but necessary programs for people with severe disabilities will save the state money, but the article points out some of the added costs of the state's approach. The cost of a full-time job coach for one man is $2,250 per month (that's around $33,000 per year). A sheltered workshop where one supervisor looks after a group of seven people costs about $7 per hour compared with $25 per hour for one-on-one support. One family referred to in the article decided to have their daughter live in a full-time, live-in institution paid for by the state, because there was no other way to get services appropriate to their child's needs.

A full array of programs is obviously necessary to meet the needs of this diverse population. As one parent puts it, keeping in mind the civil rights of her daughter,
"If she is too disabled to work, then she doesn't get [state assistance]. If you think about discrimination against people with disabilities, you expect that from the outside world-- not from people in the disability community."

Tuesday, July 7, 2009

WCHO Recipient Rights

Yet another meeting...

The Washtenaw Community Health Organization is our local Community Mental Health agency that serves people with developmental disabilities as well as people with mental illness and substance abuse problems. Anyone who suspects that a person receiving services through the WCHO has had his or her rights violated may file a complaint with the WCHO Office of Recipient Rights. It is especially important for employees of provider agencies to file complaints on behalf of the people they work with and it is a serious offense if they fail to do this.

Rights violations include various degrees of neglect and abuse, unnecessary invasion of privacy and confidentiality, unsafe living conditions, failing to provide services suitable to the person's needs, failing to treat the person and family with dignity and respect, to name just a few. The Policies and Procedures for the CMH Partnership of Southeast Michigan provides comprehensive information on the rights of people served in the mental health system.

The Recipient Rights Advisory Committee for the WCHO met on June 18, 2009 to review recent data on rights complaints. The data for the second quarter of this fiscal year (January through March, 2009) shows a large increase in the number of complaints received over the same quarter last year (118 versus 66 last year) as well as a large increase in the number of substantiated allegations (allegations that the Recipient Rights determined to be rights violations). This year there were 72 substantiated complaints as opposed to 30 last year during the same quarter.

There have been serious problems with one provider agency that has generated a number of complaints, but this is not enough to explain the increase. The most complaints have been from residential group homes for the developmentally disabled (19) and supported living placements (39). Supported living placements are unlicensed and serve up to 4 people with developmental disabilities with services provided in the home.

Only two of the incident reports came from families or guardians with 58 originating from the Office of Recipient Rights, 25 from recipients, and 24 from staff. It is especially important for families and guardians to be aware of complaint procedures and to use them when problems arise to ensure accountability and to correct problems within the system of care.

For more information on rights violations, go to the WCHO Recipient Rights Web site on how to file a complaint.

The Recipient Rights Advisory Committee meets quarterly with the next meeting in September 2009. There are two openings on the committee. If you are interested in joining the committee or have other questions about recipient rights, contact:

Shane Ray, Recipient Rights Supervisor
(734) 544-3000