Miguel gets nothing without resistance. Here's my letter to my State Rep. today........
Scott,
Today I rec'd a call from Janice Baines, MHMRA. She explained that the state wanted to know why Miguel needed residential placement, despite the fact they have all his evaluations, paperwork, applications and a court order. I then had to explain to her about Miguel's physical/verbal aggression towards himself, me, school staff, children at daycare, daycare staff, etc. even though that has been documented at MHMRA already.
She called me back a little later asking about my Respite services and recommending that I find more providers, as I had explained that my Respite worker appeared to be getting tired of providing Miguel services. I explained my great difficulty finding daycare and contracting a Respite provider.
She also asked if I would be willing to take Miguel back into my home in 6-12 months after admission, if it was warranted. I said yes. Of course, my son is always more than welcome to live at home, however, I don't feel that is what is appropriate for him based on his need for structure, consistency, 24 hour care and his behavior. My son needs a staff and not a parent. I didn't tell her that b/c they would NEVER admit him.
Basically, the state is trying to save money by keeping Miguel in the community, so they are trying to smother us with Respite hours and justify why placement is inappropriate.
The bottom line is that Respite does not equal appropriate behavioral treatment. It prolongs the inevitable, which is placement.
MHMRA is offering Miguel ABA therapy (specific behavioral treatment for Autistic children) 1.5 hours a month. This would require me to take a day or half a day off to get Miguel from school, bring him in for a session and then bring him back to school. ABA therapy is only therapeutic when it is intensive, approx 8 hours a day, everyday...not 1.5 hours a month.
Miguel has an IQ of less than 20. He is profoundly mentally retarded with a prognosis of possibly being severely mentally retarded (this is suppose to be an upgrade). His speech is inadequate, inconsistent, inappropriate and sometimes absent. 1.5 hours a month of ABA will, most likely, be completely ineffective.
Miguel is not eligible for behavioral treatment b/c he doesn't have Medicaid and I could never afford it on my 34,9K salary.
Scott, we have a load of Respite hours. 57 a month through MHMRA, which started this month. 200 hours a year (approx....I actually forgot how many) through United Cerebral Palsy, which I started last October. 8 hours a month through HISD. The problem with Respite is, I have one provider, who is exhausted and appears to be annoyed with me if I ask for more than 4 hours a week. She also has a full-time job working opposite shifts of me, which is not always conducive to my Respite needs.
Ms. Baines tried to problem solve with me to find more Respite workers. Fact of the matter, if I found someone through my networking that was appropriate for Respite work, then I would've contracted them already.
Scott, I joined the Corps when I was 17 and turned 18 one month after boot camp. I was a Sergeant of Marines by the age of 19 and a Platoon Sergeant before I was 21.
In 2003, while taking a Research Methods in Psychology course, I diagnosed my son with Autism after 3 years of inquiring to medical and educational professionals about Miguel's strange and bizarre behaviors.
I have a Master's in Social Work. Miguel and I moved out of my husband's home in 2005, I applied for a Master's in 2006, was divorced shortly after and put myself through a full-time Master's program with a scholarship, financial aid and 4 jobs....all while I was a single mother. Within a month of graduating, I was hired by the Red Cross in Houston and I humbled myself by asking for housing assistance from my brother, all in effort to meet my sons needs. Miguel and I have shared a room, sleeping on daybeds and we will be moving in a month to our own home.
I am telling you this b/c I am not dumb. I'm not an idiot. I am not a sissy and I have tolerated more than anyone ever should from systems and from my son. I understand systems, funding and budgeting. I see their agenda. The few things I have gotten for Miguel, have not come without a fight and I knew this was too good to be true. It all seemed so smooth and easy and I foresee my hopes and dreams for Miguel crashing in on me.
I asked for your assistance b/c I know how systems view clients and how tightly systems hold onto their purses. I know how much work you have done for Miguel already, which appears to me like moving mountains b/c no single mother could ever do it.
It has been a super long road for Miguel and me to come to this point and I have not gotten here with ease. I have struggled on all decisions I made for Miguel and I evaluate them meticulously before going forward with my decisions. I am comfortably at the point where I know Miguel needs a staff, despite my crying throughout the court hearing, I know this is right.
If there is anything else you can do at this point, I would greatly appreciate it. It feels as though they may be trying to stack the cards against us and Miguel's father and I are strongly considering signing our rights to the state so Miguel can better get his needs met.
Thank you in advance.
Kelly
Hey Tarabay, have your people call my people.
Tuesday, May 20, 2008
Subscribe to:
Post Comments (Atom)
3 comments:
My peeps are calling... They have the caddie gased up and ready to go. The less you know about this the better. The process is quite detailed and if the Feds ever catch up to them, you dont want to know anything...
I dont want to pretend that I know anything about this because I dont... But it would seem difficult enough to sign over rights for your child, but to force someones (The State) hand in the matter seems nuts... Wouldnt this be a Yes he's qualified, or no not he's not quilified answer??
You know, something else... If none of this works you could always take a dump Janice's doorstep... Just a thought...
I would recommend that you check out:
http://www.whowillcare.net
http://www.dontblockmyvote.org
http://ucpeople.blogspot.com
http://directsupportprofessionals.blogspot.com
Each of these are resources to help you get the respite care you need and require. Hope these help.
Will Hull
eAdvocacy/eCommunications Coordinator
United Cerebral Palsy National Office
Thanks, Tarabay. I'll pay for their gas! ;) Things are better now. With the assistance of my State Rep, all is in FAST FORWARD!!! :)
Paperwork deadlines are set for agencies to have information in on Miguel and stuff is FLYING BY!!
I don't have to sign over my rights. :) That was "bum scoop". So, essentially, Miguel's placement costs more money than keeping him in the community...hence the resistance.
Taking dumps on doorsteps is always, I beleive, a fine way to get the message across. More people should grasp the technique. ;)
Kelly
Hey, Will!
Thanks for the info! I love and appreciate Respite more than the next person and I have 65+ hours a month of it (this is a recent development to appease me and keep Miguel at home).
However, all the respite in the world will not stop my son from attacking the daycare provider, children, teachers, me and the respite provider. Respite will not stop him from screaming uncontrollably, bashing his head against the corner of the wall, the concrete floor, the corner of the table, etc.
There needs to be treatment and unfortunately, without Medicaid, there is no treatment available.
It's a sad, pathetic system and time for a change. :(
For example, drug addicts use to be eligible for SSI (approx $575/month) until almost a decade ago.
Why can't special kids (especially Autistic) be eligible for Medicaid, regardless of parent income/assets, if the ONLY billable way for treatment is through Medicaid or CASH?
Who has that CASH? Jenny McCarthy does. Magic Johnson does. All the while, common people suffer b/c treatment resources are not obtainable.
I use to call the social injustice the "Magic Johnson theory". HIV was treatable if you were Magic Johnson but if you were common...it wasn't. Thankfully, things have changed. However, the same theory holds true for Autism nowadays. Treatment just is not available and Autistic kids that are not habilitated, will flood our State Schools, group homes and nursing homes. The gov't will not be able to support the influx and it will be an economic tragedy in a decade or 2. With early treatment, these folks can be more productive members of society and not completely dependent on society. 4 years ago, Miguel was Severely Mentally Retarded and now he is Profoundly Mentally Retarded. His future is grim but if he had proper treatment, this probably would not have been the case.
Will, this is TOTALLY not directed at you. I am just ranting. I actually should have just blogged my rage. LOL! Sorry. :)
Kelly
Post a Comment