The governor has signed 5459 into law. As noted previously, it is a very flawed law. As I have been assessing the process by which this happened, I keep running into information which makes me question it, question the legitimacy of the process. I wish I were an attorney with such information at my disposal. I have so many questions!
Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.
These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.
I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?
Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.
Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.
This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.
Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.
These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.
I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?
Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.
Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.
This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.
I have to post in a couple comment spaces due to the length of the post:
ReplyDeleteOver and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about the how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without.
This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates. They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs. That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be.
Yes, there are individuals with just as complex needs living in the community – no one is denying that fact. Also, no one is telling those individuals or their families that their care is too costly so they will be evicted. These individuals are celebrated for the fact that they live in the community – but do they really?
I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center. This man has been celebrated as a success for the Roads to Community Living Grant. I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution. Brock was the example they highlighted in showing how great this program could be. There is a video on Youtube entitled “Brock 8” which refers to this gentleman.
At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years. In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior. Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation. Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job.
What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.” I took that to mean that because this expensive experiment wasn’t as successful as they wanted to picture it. I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.” There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor.