Thursday, May 29, 2008

Hochberg for President!!!

This blog is a little late...

My State Rep. KICKS ASS!!!!

He and his office are working very hard on Miguel's case. I knew he was kicking butt BUT it was great to hear that from my local MHMRA. They informed me of all his work and adamant advocacy within the MHMR office, Richmond State School and Dept. of Aging and Disability.

With that said, I believe that I have never had someone work so hard for Miguel and me, with the exception of one of his teachers, Julie Rohrbach, who got Miguel into an Autistc classroom.

I've always had resistance from every system. I know there are always a boatload of services that are never offered unless you ask for them specifically...and then beg for them....and then have to justify why you should get them....and then tell them over-and-over again that you are going to get that service. The system blows.

I think Rep. Hochberg is going to have to get a t-shirt delivered "I heart Hochberg" and "Hochberg for President".....why didn't I go into politics?

That's where the REAL change is!!!

"Politics is not a bad profession. If you succeed there are many rewards, if you disgrace yourself you can always write a book."
-- Ronald Reagan
This past month, I have felt the rewards of politics. :) Go Hochberg!!!

Tuesday, May 20, 2008

I hate people.

Miguel gets nothing without resistance. Here's my letter to my State Rep. today........


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.


Hey Tarabay, have your people call my people.

Sunday, May 18, 2008

Anticipating a new start

Court was "successful", if that is what you want to call it. I testified that Miguel was not manageable in his "least restrictive environment" (LRE) and that he was in need of a more structured environment.

Miguel's evaluations show that he needs "constant supervision" and a level of need is an "8", which indicates residential placement.

I am part relieved that Miguel may get his needs met by a 24/7 staff, that I won't die an early death from exhaustion and emotional beatdown and that Miguel may learn to live more independently and maybe even communicate his needs better. I have hope that this is what is right for him.

I am part sad b/c he is only 10 and "going away". I liken it to maybe how a parent feels when their children go off to college. However, the difference is 18 yr. olds CHOOSE to go to college and I am going to court to COMMIT my child to a State School. It's such a painful process and unique, that no one would ever understand if they haven't done it.

The other side of it all, which I have thought about briefly, is how this will change me.

I've always worked my life around Miguel. All things in Miguel's time. I scheduled my college classes/jobs/domestic tasks around his school/daycare/bus schedule/mood. I function based on his agenda and now I will be able to do WHATEVER I WANT, WHENEVER I WANT. I have NO idea how I will respond to this sort of freedom. I never did what I wanted to do, but rather what I had to do....and now it is my time. I haven't had this in 10+ years.

I tell my close friends that if I disappear, don't bother looking for me. I may go to Mexico for the day and return in a decade. I consider selling beaded jewelry in a tiki hit on the beach...somewhere. Fortunately, the sky is the limit and hopefully, I figure out how to function without him.