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Tuesday, January 18, 2011

Action: Working to ensure all necessary support and services

Submitted by: Representative Naomi Gonzalez

House District 76

"During the upcoming session, I will work diligently to protect the rights of children with disabilities so that we may ensure that our most vulnerable receive all necessary support and services."

"Perske Pencil Portraits 1971-1990"


Linda said...

We must remember all those with disabilities. Many, even though they are now adults. still have very similar needs as children with disabilities. Everyone needs to be assured they can live a life as independent as possible and as part of their community. Community services need to be funded for all those who have disabilities. It can be a life and death situation for many of them.
Linda Austin, Texas

Anonymous said...

Please remember all people with disabilities, not just the children. Unfortunately we forget that these children grow into adults. If they don't get the support they need to thrive when young, they will need even more as adults.

Lynda said...

Support services such as occupational therapy, speech therapy and physical therapy are invaluable to our children. We depend on them to teach us how to help our children grow and interact with their environment. Please do not allow anyone to cut the funding for these extremely necessary treatments. As they mature to adults, the services are still necessary to teach us to adapt and help them continue to interact with other individuals.

Claudette Fette said...

I am saddened but not surprised to see that my son was not represented here. My oldest son has schizophrenia and has had mental health differences from early childhood. His school told me to just take him home and if I wouldn't tell, they wouldn't when he was in the 5th grade. We exhausted life insurance, savings, retirement and sold our house trying to access "care" that ended up just abusing him by the time he was 12 and 13. At 14 he was living on the streets, hopping trains from city to city far away from home. Today, at 33 he has been in prison, he lives in a ghetto in Alaska and he really cannot not come back to Denton, Texas. You see, the police here are afraid of him and they harass and beat him; he looks really odd with tattoos all over his face; he has no cohort here - never made it to jr high or high school - no proms or dates or football games. He really fits nowhere. He has parents who love him ... brothers too. His next younger brother is in medical school. His youngest sibling had some of Aaron's initial issues but by then we had learned what to do ... we built on his strengths and fought hard to build systems and supports that honored his capabilities in spite of the ignorance of the systems in our community regarding strengths based practices or systems of care. He still has some differences in learning but what a capable and emotionally intact young man ... and in him I see clearly the potential that we wasted in his brother's life.

Frankly no one is covering them well at the state level right now. The Texas Federation of Families is the Statewide Family Network but their resources are stretched serving families and supporting local family leaders where they exist. There was a time when they/I did more advocacy but right now we are contracting to a state where we just respond to the greatest needs with the most hope of efficacy and statewide advocacy has been somewhat akin to beating one's head against a wall in recent years. I know the folks claiming to represent us right now and I don't believe they include our kids any more than this web page does. Patti Derr with the Texas Federation of Families and the Center for Healthcare Services in San Antonio are currently building a system of care that the state would benefit from studying.

Claudette Fette said...

in reading the comment above mine, I need to add a bit - I am an occupational therapist and became one because I needed make meaning out of my oldest son's tragedy and to figure out how to do a better job. Along the way, I met Patti Derr with the Texas Federation of Families and she in turn has introduced me to the best and the brightest in the field of children's mental health nationally. I have learned so much from so many brilliant and dedicated people. My youngest son and countless others have benefitted from that knowledge ... still really only at the rate of one child at a time. Our systems in Texas do not hire people like me for kids like these ... I have worked in community, acute psychiatric hospital and now in schools but most of what I do for kids like mine is volunteer work. You see, I am highly trained and skilled and in Texas the workforce that we give kids like mine is not.

In school practice, I am frustrated often with the expectation that I give more time for kids who really don’t need it because they have labels that are perceived to be entitled extra services ... while many other children who I might be able to help are not even considered. Fortunately, I am in a district that believes in Response to Intervention and gives me leeway to extend myself a bit beyond some habitual service boundaries ... although some of that even has to be framed as "volunteer" work. But the disparities between populations are glaring. I still give lots of time to children for whom I am just an entitlement. I love those kids and we have fun, but it is poorly used resource if I am not contributing to progress for them when still others go without. Children with mental health needs ROUTINELY go without.

Margie said...

My 30 year old son, Kevin, has an orphan of genetic problems. He is XXYY… not the normal male, XY. As a baby we were told Kevin would be retarded. But doctors didn’t know anything about chromosome differences in 1980. Kevin is not retarded, just weird, out of step. He has lost every job due to something he said/did that a ‘normal’ person would never do. I have tried over and over to find Kevin a program or something. I know if he could find a job coach or someone to help he could become a productive citizen. He hasn’t had a job in over a year … he lost his job at an assisted living home when cleaning up a room he saw where an old man soiled himself … Kevin began shouting ..”SHIT, SHIT, there is SHIT everywhere. Kevin would never hurt the old man’s feelings on purpose … he just doesn't understand social rules. Kevin was on SSI since 1998. Last year we got a letter saying ‘now that Kevin is better, he no longer needs help.’ My retired husband and I have been totally supporting Kevin. He has no Medicaid now. DARS in Baytown, TX finally told us Kevin would have a job coach. He was to work from 8 am – 2 pm. When he went he found everyone else was retarded. Kevin is not retarded, just ‘odd’. The first hour they picked up trash on the road. That was the good part of the job. The next 5 hours they set at chairs at a table. Kevin asked if there was something he could do. One of the 2 ‘job coaches’ told him to set down. The second day Kevin kept asking what he could do and one of the job coaches told him this job wasn’t for him and not to come back. Kevin was never paid for the 2 days he worked. Texas is paying for job coaches that did not help. Kevin is bored. We are running out of money. I know there must be some program for Kevin. I am not that clever on the computer. I keep trying. I go to meetings where I am told yes Kevin should qualify for a program to help him. If only I could find it. It would be so much easier if Kevin had a ‘normal’ disability … if he were really retarded or blind or something social security could understand.

Anonymous said...

Thank you for supporting and advocating on behalf of all Texans who have a disability. You are respected by all, no matter where they choose to receive services, State Supported Living Centers and community supports.

Belinda Gaddis said...

My son receives benefits under the CLASS waiver program. Benefits we could not afford otherwise. Benefits which are essential to his development. Benefits which are not covered by our personal insurance. Please remember that each cut that is made is a cut to a person's services. Thank you.

Anonymous said...

Children are our future. We need to keep in mind that we must ensure that children are not left without services and supports that enable them to thrive and grow in a caring and nurturing society. Children with special needs need to maintain the level of support that they are receiving now, we cannot afford to not give them the services now as we will suffer the consequences in the future. Please ensure that children and adults with special needs continue to live and grow in their communities with the appropriate supports.

Cecilia said...

Dear Rep. Gonzalez: As a citizen from El Paso, I thank you for supporting individuals with special needs. I want to tell you a little about our situation.

When my son Nathan was born (in El Paso in 1988) we could not find appropriate services for him. While ECI - Early Childhood Intervention - was great, the school system had much to be desired. We left in 1995 for San Diego; there he received high quality services & we were very satified. Now, in 2011, we are back in EP and at the bottome of most Medicaid waiver lists. I'm told it will be up to 10 years before I can count on services. MHMR has been of some assistance but its not enough.

There are many others like us. We are hoping to revive the ARC Del Paso in hopes of providing other families with some assistance. Is there anything you can do to help us??

Thank you so much for your continued support for individuals with special needs.

Cecilia Navarro Tanner

Anonymous said...

My daughter's Developmental Specialist said that her disability would likely make it impossible for her to drive someday. He told us about CLASS and HCS and said sign her up now! The list has about a 10 year wait. I put her on the list when she was 12 years old.

Not being able to transport herself by driving will be only one of her needs. Will CLASS and HCS be there to help her make her own way?

Mother in College Station

Anonymous said...

Dear Rep. González: I want to thank you for supporting individuals with special needs. I want to share you my 4 year old son story with Down syndrome.

He's a very smart little boy who goes to school, and he loves it. However he doesn't like trying coloring or writing because of his low muscle tone (due to his Down syndrome). He doesn't get much direct help from school.

Furthermore, he's been denied CHIP services at the beginning of next month. Medicaid? That's a dream for him. MDCP program? I've tried to qualify him for Medicaid through this program, but have no had any good luck yet.

Then, I'm very concerned about his near future because without weekly therapies his improvement is not going to be the same. How is he going to like writing without any professoinal support? How is he going to get medical health? The option to go to Chihuahua, Mexico for his medical check ups is more difficult now with the increasing violence over there.

If he was qualified for MDCP he'll get Medicaid, and a lot of services along with that, but it is not an option for him. So, if he's suppose to wait more than 8 or 10 years to get some help, how many more years will he need to wait now 20? That's not fare.

He had to travel to Mexico for the first year of his life for medical check ups because he didn't qualify for Chip then. Sad situation right? There are many other kids and adults in the same situation who will have to repeat the same situation again if the state tries to cut the most neccesary services for them.
Unfortunately many powerful people don't care about these situations.

Thank you so much for allowing us to express our concerns for our precious children.

Thank you so much for your continued support for individuals with special needs.