This post will be two-fold, so hang with me.
The other day I was in Target and saw a group of people with Down Syndrome shopping. One of them picked up a "jack in the box" and began turning the music handle. He held it out for one of the other teenagers until it "popped". The other teenager didn't even react. The first one questioned why it didn't scare him. The second kid said, "I took my chill pill today". I don't know why, but that phrase "chill pill" really struck me. I couldn't help but think that his caregivers call it that. And then I had to wonder who benefits the most from his "chill pill", him or his caregivers.
I have a close friend who has a son with Cerebral Palsy. He is quite disabled, and can barely even use his hands. She sent me an email asking for help. I'm posting it here in hopes that maybe someone reading it will have some ideas of how to help her. I have left off their last name, as well as the name of their county for protection sake.
"I am asking all of you for your support and assistance at this time for Elliot. He is a 21 year old young adult with developmental delays and cerebral palsy who is also a quadriplegic.
Because Elliot is over 18 years of age, the Regional Center (a state funded agency that serves people with disabilities since birth) has advocated for Elliot to move out of our family home. I am in agreement with him moving into a place where he can be more independent and blossom. However, only when he is ready and the place he is moving to is safe, do I want him to move out. I want him to succeed and be healthy and happy, as we would wish for any of our children as they venture from the nest.
Regional Center subcontracted an agency, Mentor Network , to provide interim care in our home prior to Elliot’s move out. Elliot is still unable to advocate or confront caregivers, and does not even recognize inappropriate or dangerous care. After a month or so I began noticing problems.
To sum it up, I found the following:
Elliot was being left home alone during shifts when care providers were supposed to be here. They were leaving him alone without access to the phone, in the middle of their shifts, to go buy their own lunches.
They left him home alone for two and one half hours and did not notify me or the agency they work for that they’d be leaving him. Remember, we are talking about someone in an electric wheelchair unable to get out of the house or access a phone.
They have left him in wet diapers for 8 hours at a time over a period of two weeks, before I noticed while checking their changing charts.
They have left feces all over his sheets and pillowcases and made the bed over it on several occasions.
They were not giving him any water during the day.
They were to provide nourishing meals, (and we have plenty of food in the house) and in an 8 hour period he was given a granola bar and a pudding cup and one glass of milk. (Fairly typical of what they were giving him daily.)
One of the caregivers bragged about sleeping through the CPR class he was “forced to take”.
I made complaints to the company, Mentor Network. I made numerous (18 emails and many phone calls) complaints to the Regional Center. I made 4 APS reports. When APS called the Regional Center they said the complaints were not warranted. APS stopped their investigation.
Regional Center ignored my complaints and proceeded to move Elliot out of my home into a room in a woman’s house, who would be getting $400 a month rent for a room, plus another $2000 for caring for him through IHSS (another state agency) while she slept in her own bed, in her own room upstairs. (Remember, this is your tax money at work)
I filed for an emergency conservatorship to stop the move. Because Elliot was receiving inept and inadequate care from Mentor in my home, I don’t believe Mentor would do any better without supervision.
The following morning Regional Center had the judge turn over temporary conservatorship over to the public guardian’s office. The Regional Center stated that the judge should not have signed the order without an investigation. It also allowed Regional Center to not have to respond to my complaints, as I was no longer someone they had to legally talk to.
Since that time all services have been illegally suspended (without notice, without warrant) by the Regional Center. The public guardian has asked me to intervene on their behalf for Elliot and file for fair hearing, etc., since they don’t know how to and Regional is not responding to them with their requests for services. It is Regional Center’s responsibility to provide emergency placement or care for Elliot and to provide him what is in his current care plan.
He is still in my home, legally he is a renter, and I am his IHSS worker (minimum wage) for 9 hours per day. The other 15 hours there is no (legal) care. I am doing it because I am his mom. Elliot is entitled to receive 310 hours of respite care services per quarter. We are receiving none.
He dropped out of his first semester of college because the Regional Center is not providing the transportation they are required to provide as outlined in his service plan (IPP - Independent Program Plan).
He has been sitting home alone, in my house for nearly 3 weeks, alone, with not a thing to do.
I have contacted my Senator, the DA’s office has a file, the Area Board (an agency that oversees Regional Center), hired an attorney to work on a conservatorship, and on and on. I have spent 9-12 hours a day working on resolution and caring for Elliot. This is affecting my other two teens as well as Elliot and me.
I have called the three tort attorneys here in our County. One could not take the case because she does work for the county, the others just could not. I am looking for a tort attorney, or a litigation or civil rights attorney. The grand jury looked at the case but cannot take it because Regional Center is funded through the state of California, not the County.
Today I spoke to another mother of a young woman who had cerebral palsy and was very similar to Elliot. The mother had the same concerns I have. She tried to get conservatorship, not to stifle her daughter, but to help her find a safe, supportive environment to live outside the home, as I am doing. She lost. She also lost her daughter. Because she works for one of the agencies, she could not tell me details, as she is to remain non-bias and just make a report of Elliot’s desires, but she begged me, crying to do all that I can to protect Elliot and to honor her memory of her daughter.
It used to be that we hid people with disabilities, sterilized them against their will, did not give them choices about their lives. That was wrong. But now, the pendulum has swung the other way. As soon as a person turns 18, he or she has the right to do what he or she wants, regardless of their mental capacity, and Regional Center will fight like hell to make sure the person is not conserved. While Elliot “graduated” from high school, his test scores show his mental age to be around 8-10 years of age. Regional Center states, “If he asks for something, you must honor it” [because he is over 18].
I do not want to conserve Elliot to take away any of his rights, but so that I may assist him in decison making, advocate for his needs and stop real or potential abuse, negelct or abandonment. Regional center has not done this, and Elliot, in his own admission says he is unable to know what poor care is, and where or how to report it. At this time Elliot needs training in self advocacy so that he can learn to stand up for his rights.
I have done all I can, I had 6 months from the date of issue to file a civil case--we are two months from that deadline. I need an attorney. I also need support in whatever form you can provide, prayers, thoughts, suggestions, friends numbers, anything.
I do not want to end up like the woman I met today with a child dead at 25 due to poor care. The Regional Center beat her down until she gave up, and in that, she gave up her child’s life. I do not want to have to look at that woman and say I, too, gave up. I do not want to see my son dead, nor do I wish to see him abandoned, laying in feces, unfed, without water …
Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it's the only thing that ever has. Margaret Mead