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Thursday, January 20, 2011

Action: Remembering children of special needs when considering the state budget


Submitted by: Representative Paul Workman

House District 47


"Perske Pencil Portraits 1971-1990"


"In this very difficult budget time in our state it will be important for us to remember that budget cuts affect real people and many of those are children of special needs. I hope we can remember these children when we consider the budget."

38 comments:

Linda said...

Rep Workman, you are our Representative. We have a 21 year old son with severe autism who is currently working with the assistance of a job coach funded by DARS and with the supports of attendants funded by DADS/CLASS waiver program. Without these suports, he would not be able to live and work in his community. His life would be a waste. He is now a contributing member of society as well as leading a very purposeful and productive life. Please do what you can to be sure these community programs continue. His life is in the hands of those making these decisions. We will be coming to visit you soon so you can put a face with a name. Thanks

Ann said...

Rep Workman,
I am delighted to read your call for the legislature to remember children with special needs as the budget is addressed. I encourage you to expand this to adults with disabilities as well. thank you.

Michelle said...

Rep. Workman,

Your compassion for children with disabilities is commendable. In this economic climate, it is more important than ever to remember that the budget cuts made during this session will have a devastating impact on Texas' most vulnerable citizens. I respectably ask that you support the use of the "Rainy Day Funds" to mitigate such losses, because, as you have stated, these "cuts affect real people."

Thanks

Anonymous said...

I am a social worker who works with children with special needs. Please consider this vulernable population of children and their parents when thinking about making cuts to the budget. This population of children and families have had to sacrifice in so many ways already. Thank you and please continue to advocate for CSHCN.

Janice said...

I am a mother of a 9 year old with multiple disabilities. Please convince others to think about our children and please don't cut the budget when it comes to children with disabilities. Texas already ranks so low when it comes to caring for our children, please don't make it worse. Our children did not ask to be born with their disabilities, please don't punish them by making their daily life even harder. They need anything and everything that can be provided for them.

Firefly said...

I am the parent of a 19 yr. old daughter with a bone disorder. In 2003, the last time of severe budget cuts in TX, the funding for a program that helped us pay for medical expenses (In Home and Family Support) was cut by 2/3rds. This program helped us get to medical appointments, buy essential equipment and pay caregivers. When it was cut by 2/3rds, it hit us hard. Please, please remember that when you consider cutting funding to programs that help us care for our children on a daily basis, you are effecting our ability to give our kids the best quality of life we can. When I had to tell my daughter we couldn't go places other than medical appts., because we needed to save gas money, it was heartwrenching. But when we lost 2/3rds of our reimbursement for transportations costs to medical appts., we had to cut out other things. Parents of kids with disabilities struggle every single day to provide for their kids. The state programs exist because they are desperately needed by these families. Please don't cut state programs for children with special needs.

Anonymous said...

I am the mother of a 14 year old child with special needs, and I do not know how we would be able to financially handle caring for our daughter at home without the help of our state (TX). We appreciate every dollar that the state helps us with!!

Laurie said...

Rep. Workman,
I am the mom of a 13 year old with a developmental disability and special health care needs. Thank you for your concern for this population as it relates to the budget cuts. Our children, who are fast becoming adults, need supports in place to enable them to live a safe, healthy, productive, inclusive life. It is imperative that services that support this population not be cut. Thank you for all your support!

Christine said...

My son is 18 and has severe autism. He is on the HCS waiver program which helps provide an in-home aide. The CDS option has also been a wonderful help in allowing me to pay someone a fair amount to work with this challenging person. Thanks for remembering our needs!

Anonymous said...

Thank you, Rep. Workman, for your comments.
I and many other Texans also hope that you and your colleagues on both sides of the aisle consider and remember those who are affected by the choices made in Austin.
For these Texans, whose resources are already proportionately less they would have in almost every other state in our country, the impact of even "small" cuts is disproportionately large.

Sharon said...

Thanks Rep. Workman for thinking of the kids in need. I am a parent and I know the challenges with a kid with special need. I can't imagine that the services will be even less available for them in the future, although they are still in need of many things... The budget cut not only affects these kids right now, but also may bring more burden to the families and society in the future. Put them in priority-- they remind us about love and patience, and together we are a truly humane society.

Anonymous said...

Thank you Rep. workman for remembering our children when adjusting the budget. These children and parents so desperately need the funds to pay for essentials of everyday needs. Needs that whole and well people take for granted.

Tamara said...

Thank you so much for your positive opinions regarding children with disabilities. Rather than hope to remember them during this critical time, you must remember them.

I have a 7 year old adopted daughter with Down syndrome. She was placed for adoption as an infant because her biological parents did not want her due to her disability. They could not see the value and hope in her future. Texas must see her hope and value. She is a bright, beautiful, energetic child, and the love of my life. Everday is a celebration of her life. She is our blessing, and we want only the best for her, as would any parent. She has been on the CLASS and HCS waiting list since she was three years old.

Any cuts to the services for which we are waiting will be devastating for her and our family. I view these services as a safety net to ensure that she will be fully integrated into her community. I believe that CLASS, HCS and other Medicaid Waivers are a critical component to our children's future success and the only way to ensure their rightful place within the community. The services she needs now, and in the future, will help us and her realize her goal – to stay in her community and work and have the fulfilling life we all want for our children.

Anonymous said...

Thank you Mr. Workman for speaking up for our kids needs during this hard time of budget cuts. Their medical & therapy needs are financially devastating to families, & utterly heartbreaking to conceivably think you may not be capable to provide what your child needs. We rely on every cent, every helping hand. It's also financially sensible for the state to continue to invest in our kids' growth. Help them now become independant adults that may not need as much support in the future.

Anonymous said...

I work in a Children's Crisis Unit in San Antonio, TX. and, there have been several families that have brouth their children in with disabilities (e.g., MR, Speech impediments etc...) There is not one hospital in Bexar County that will agree to admit a child that cannot go to the rest room on their own, speak or having hearing impaired disabilities. It is sad that we have a government that will fund Wars, bail out big auto manufactures but will not take care of their children with disabilities. These mothers many are single just want to leave them in the Crisis Unit because, the children are violent. Medications can put them to sleep or knock them out for a while but, they cannot sleep forever. Parents even go to the extreme and, not pick their children up at the San Antonio State Hospital when they finally have an opening which is hardly ever because, so many children's parents have abandoned them. Texas is one of the lowest funded states when it comes to the mental health of chidren. But, yet I see so, many research center's here all down medical drive. This tell me that somebodies priorities are all screwed up and, Texans will reap what they sow! Concerned Citizen!

Colleen said...

Warm greetings from Texas District 5.

In response to your desire to “remember these children” I’d like to share a Youtube link of our son, with Down syndrome, reciting all of Psalm 23, in a Florida church, when he was only 5 years old. ECI was invaluable in providing a very knowledgeable speech pathologist when our son was only 2 ½ years old. Ryan has since recited this passage in Arkansas and Texas churches, along with The Lord’s Prayer at The National Day of Prayer and has recited the Pledge of Allegiance at Buddy Walks, rodeo events and Veteran’s Day programs. Interestingly, one school speech pathologist labeled him as “non-verbal” 6 months prior to him being interviewed on our local CBS station identifying most of the 100 Great Wonders of The World at age 3 ½.

http://www.youtube.com/watch?v=CO3aQGQ4gXI

Also, regarding CHIP: This program needs to open up to special needs families. When the company my husband worked for went out of business, we lost our insurance and sought the help of CHIP. Ryan was too healthy for the Medically Dependent program and too "risky" for private insurance even though he's always been healthy and never required surgery. We qualified the first year but didn't the second because our income was barely over the limit.

Our children are capable of so much. Let’s really remember them by rallying around them to protect their services and supports from birth on into adulthood.

Thank you for your work.

Jennifer said...

I am a single mother of two, and my oldest son who is 11 years old has mutliple disabiliteis. There have been a lot of struggles getting the help my son needs. Right now I have trouble finding a facility that can take care of him during the summertime.

My son has also blessed me with a wonderful job. I work with families that have a children living with a disability. I am able to relate with the families and help them go through getting the help that their children need.

It is hard for families that do not live with disablities to understand the challenges we face daily.

Please evaluate all the programs that are already out there to help us families. Consider consolidating affective programs versing cutting the programs.

Patti said...

I am a parent of a 37 year old adult with mild mental retardation. I began advocacting for the rights of and improved services for Texas' Children, youth and families in 1982. There were no funds at all for children. Now we have funds but we failed to employ or maintain the state administrators that would take these funds and use them to their maximum potential. For 3 decades, my goal was for Texas to invoke Texas Pride and pull us up from the ranking of 46th out of 50 to a more acceptable ranking. After 30 years of dedicating my and my children's lives to improve services for children with behavioral needs and their families, we rank 49th. Its embarrassing. I have connected with the national leaders and they are just as dumbfounded by our lack of compassion, willingness to learn and lack of foresight when it comes to the costs of our high end kids. Texas must grow up and do something !! PAY NOW AND CREATE A TAXPAYOR OR PAY LATER AND CREATE A TAX BURDEN ! KEEP TIFI !!lETS MAKE A DIFFERENCE FOR TEXAS FAMILIES NOW!!

CTD/Coalition of Texans with Disabilities said...

Rep. Workman,

Hoping to remember kids and adults with disabilities is a good thing, a better thing would be for you as a legislator to speak publicly that cutting community services for people with disabilities is not acceptable and that you would support what it takes, including a balanced approach to closing the budget shortfall with some cuts, using all the Rainy Day Fund and finding new revenues.

Tena said...

My daughter Kiley is 6 years old and is the brightest light of my life. She has an extremely rare syndrome and we have to fight for everything she needs. We were struggling to pay for all her medical bills until we received Medicaid. On top of all her other medical needs, she needs cancer screening tests every 3 months and we were not able to afford it. The thought of not being able to do this for her was so painful. Knowing that Medicaid will cover these expenses means that we can catch cancer early and possible save her life. Children with special needs are so often forgotten or disregarded as "unnecessary" expenses on the community. My daughter makes friends with everyone she meets and has the best sense of humor of any one I know. She truly is a creation of our Heavenly Father, and I so thankful everyday for her.

Thank you.

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.

Joseph Meyer said...

Representative Workman:

I am the father of a 13-year old son with bipolar disorder and Asperger's disorder whom my wife and I adopted as a newborn. Both the birthfather and birthmother of our son have family members with bipolar disorder. There is little doubt that he inherited the genes that cause his illness.

Despite the biological nature of my son's illnesses, I regularly see news articles that accuse me of drugging my child. I'm called a victim of pharmaceutical company propaganda who is too lazy to be a responsible parent. The reality is that my parenting experience is an intense one that would be too much for my outspoken critics to handle; and, perhaps that is why God chose me instead of them to live it.

I do not want ignorance to impact funding for important programs that assist those with biological disorders of the brain, so-called mental illnesses. Medicines and weekly therapy help my son, but they are only somewhat effective. My son still has bouts of suicidal depression, mania, hallucinations and extreme anger. One of my son's doctors called him one of the most severely ill patients he has seen in many years of medical practice. So, I do not expect him to ever be capable of living independently without assistance.

I pay for my son's medical and therapeutic services that are not fully covered by insurance. My wife is unable to work outside the home, because my son is frequently unable to attend school. Expenses for my son's treatment mean there is little money to set aside for his future. He is now around 12,000 on a waiting list for Community Living Assistance and Support Services (CLASS). So, who is going to care for him when my wife and I are no longer able to do so? Will he wander the streets of Austin and live under a bridge as an adult?

Colleen Bailey said...

My husband and I became first time parents in our 21st year of marriage. When we learned that our miracle child was born with Down syndrome we were desperately fearful about his future. After my urgent, early intervention for postpartum depression, people from Early Childhood Intervention began showing me what to do next. They came to our home on a regular basis offering support and practical instruction and therapies all designed to give Ryan every chance for a bright future.

We were advised that we should push for receiving speech therapy from ECI even though it was generally reserved for the critically disabled children. Thankfully, we didn’t have to push too hard. Although caseloads were HUGE in our area, additional speech pathologists were signed up to help shoulder some of the ECI load. We were blessed with one of the most knowledgeable and helpful individuals who offered profound, very wise instruction.

Wouldn’t you like to see a return on your investment? By the way, this little guy was unkindly and inaccurately labeled non-verbal on one assessment outside of ECI.

http://www.youtube.com/watch?v=CO3aQGQ4gXI

(It can also be found by searching “preschooler with Down syndrome” on youtube)

I share this inspiring link since legislators want to “remember these children” because budget cuts do affect real people. ECI was crucial in our son’s foundational years in areas of speech, gross motor and cognitive development.

Not only has Ryan recited Psalm 23 in Florida, but first had the opportunity at age 4 in an Arkansas church. He has since inspired audiences where we live in East Texas in District Five. Some of his public speaking opportunities have included The National Day of Prayer, a Barrel Racing event, Buddy Walks, and a Veteran’s Day program. His gift of memory has allowed him to recite Psalm 23, The Lord’s Prayer and The Pledge of Allegiance before large crowds.

Only six-months after that non-verbal assessment at the age of 3, he was interviewed on our local CBS station identifying most of the 100 Great Wonders of The World saying words like Taj Mahal, Colosseum, Matterhorn, Pyramid, Statue of Liberty, Petra, Great China Wall, Eiffel Tower, etc.

A closing comment about CHIP: This program needs to open up to special needs families. When the company my husband worked for went out of business, we lost our insurance and sought the help of CHIP. Ryan was too healthy for the Medically Dependent program and too "risky" for private insurance even though he's always been healthy and never required surgery. We qualified the first year but didn't the second because our income was barely over the limit. While we sought appeals through CHIP and private insurance following denials, Ryan became ill and ended up in the emergency room for the first time. If our State is successful in their lawsuit against “Obama care” we need to be prepared for our kids and their special health care needs.

Our children are capable of so much. Let’s really remember them by rallying around them to protect their services and supports from birth on into adulthood.

I have requested Lesa R. Walker, MD, MPH to submit my comment to the House Appropriations Sub-Committee on Article II as part of her public testimony during the week of February 14, 2011.

Respectfully submitted by: Colleen Bailey

Colleen Bailey said...

My husband and I became first time parents in our 21st year of marriage. When we learned that our miracle child was born with Down syndrome we were desperately fearful about his future. After my urgent, early intervention for postpartum depression, people from Early Childhood Intervention began showing me what to do next. They came to our home on a regular basis offering support and practical instruction and therapies all designed to give Ryan every chance for a bright future.

We were advised that we should push for receiving speech therapy from ECI even though it was generally reserved for the critically disabled children. Thankfully, we didn’t have to push too hard. Although caseloads were HUGE in our area, additional speech pathologists were signed up to help shoulder some of the ECI load. We were blessed with one of the most knowledgeable and helpful individuals who offered profound, very wise instruction.

Wouldn’t you like to see a return on your investment? By the way, this little guy was unkindly and inaccurately labeled non-verbal on one assessment outside of ECI.

http://www.youtube.com/watch?v=CO3aQGQ4gXI

(It can also be found by searching “preschooler with Down syndrome” on youtube)

I share this inspiring link since legislators want to “remember these children” because budget cuts do affect real people. ECI was crucial in our son’s foundational years in areas of speech, gross motor and cognitive development.

Not only has Ryan recited Psalm 23 in Florida, but first had the opportunity at age 4 in an Arkansas church. He has since inspired audiences where we live in East Texas in District Five. Some of his public speaking opportunities have included The National Day of Prayer, a Barrel Racing event, Buddy Walks, and a Veteran’s Day program. His gift of memory has allowed him to recite Psalm 23, The Lord’s Prayer and The Pledge of Allegiance before large crowds.

Only six-months after that non-verbal assessment at the age of 3, he was interviewed on our local CBS station identifying most of the 100 Great Wonders of The World saying words like Taj Mahal, Colosseum, Matterhorn, Pyramid, Statue of Liberty, Petra, Great China Wall, Eiffel Tower, etc.

A closing comment about CHIP: This program needs to open up to special needs families. When the company my husband worked for went out of business, we lost our insurance and sought the help of CHIP. Ryan was too healthy for the Medically Dependent program and too "risky" for private insurance even though he's always been healthy and never required surgery. We qualified the first year but didn't the second because our income was barely over the limit. While we sought appeals through CHIP and private insurance after denials, Ryan became ill and ended up in the emergency room for the first time. If our State is successful in their lawsuit against “Obama care” we need to be prepared for our kids and their special health care needs.

Our children are capable of so much. Let’s really remember them by rallying around them to protect their services and supports from birth on into adulthood.

I have requested Lesa R. Walker, MD, MPH to submit my comment to the House Appropriations Sub-Committee on Article II as part of her public testimony during the week of February 14, 2011.

Respectfully submitted by: Colleen Bailey

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.

Christina Silva said...

Rep Paul Workman
Thank you for understanding that any budget cut will affect many children with disabilities and their families. My husband and I have a 9 year old son who is blind with developments delay and we worry every day about his future. He has been on the CLASS waiver program waiting list since he was 3 years old and we feel that any budget cuts would only make the waiting list longer. We live in the Valley and our resources are very limited.

Anonymous said...

Rep. Workman,
As you examine the options facing the legislature, please consider the needs not only of children, but of their struggling parents, as well as adults with disabilities.
I hear heartrending stories of the needs that are unmet daily in Texas. The Rainy Day funds must be tapped to provide compassion for those individuals/families in Texas. Please help, Cathy Weaver, NAMI Austin

Anonymous said...

As the single mother of a 5 year old special needs child, it is imperative for him to have Medicaid and respite care! Cutting funds for these programs may result in many institutionalized children. Children do not belong in instutitions...they belong with their families. Unfortunatetly, our healthcare system and childcare system in Texas does not allow for affordable care. Medicaid and respite (Medicaid waiver) programs fill in the gaps to ensure these (my child) stays at home with me. Please do not cut these programs!

Tamara Dixon said...

My son. Joshua, is 25 and has autism and seizures. Josh is unable to care for himself, speak, or keep himself safe. He requires constant supervision and intervention to help keep him safe, clean, fed, etc. He is in an HCS program. If the state cuts his services he could end up in a state program instead of the home setting he is in now. Please find other ways to balance the budget without cutting desperately needed services to those who are the most vulnerable!

Anonymous said...

Our special children and their familes need all of the financial and emotional support that they can get. They already deal with so many things, that other families could never imagine going through. No cuts should be passed in regards to helping out special familes that care for their loved ones in their homes.

Anonymous said...

As the mother of an adult daughter with Down syndrome, I appreciate your sensitivity to the needs of this vulnerable population. Even in the narrowest view of what governments should do, I believe ensuring adequate funding for people with disabilities for the services they desperately need to live and work in the community is a fundamental responsibility. Texas has long ignored this population and cutting the meager funding that exists now would be catastrophic for these people and their families with very limited resources. Please encourage your colleagues to look closely at the real impact of their budget cuts.

Anonymous said...

My little girl was born with Rett syndrome, a devastating neurological disorder, almost 9 years ago. She did not choose the life of limitations that this genetic disorder has handed her: mobility impairment, inability to talk, no functional hand use, scoliosis, seizures, and chewing-swallowing-bowel problems...

This precious child who would otherwise need institutional care lives with us, in our home, and is doing well despite the challenges she faces because of Early Childhood Intervention (ECI), Medicaid and Medicaid Waiver Programs (MDCP - Medically Dependent Children's Program). She has respite care and is a thriving member of our family full of joy and laughter and getting the medical attention and services she needs for Occupational/Physical/Speech Therapies.

Cutting services means cutting off the lifeline that keeps her connected to her community, that gives her meaningful quality of life, that chooses to acknowledge her as a person worthy of protection and care and yes - - it takes money to do that!

Thank you for doing all that you can to protect these critical programs! Each program supports a PERSON, a family, a story, a life that must be protected~

Rebecca said...

I appreciate your concern. My son has Autism. He waited 8 years to receive services which he received at the age of 14 years old.

We have had the services one year now which cover his after-school care. I would be so happy if my son were able to take care of himself, but he needs I consider my son fortunate to be no longer on such a long list. Now is news about more cuts that will affect his future.

Currently I am able to work as a health professional full-time, and help provide his private insurance with Medicaid as his secondary. If my son is cut from the program, the state will lose my taxable income, and we will be added to the growing indigent--adding more strain on the system. It is a domino effect.

How would you like to wonder who will take good care of my child when I die? Thankfully I found a good provider that has a decent group home for my son to one day reside. They are worried about the cut rates previously, and now again.
I had hope for my son's future. Prior to his name coming on the list I felt helpless and hopeless. I even considered taking my life and child with me. My psychiatrist said these thoughts are common in parents with special needs children. Please stand up for our kids. Thank you.

rahel said...

Rep Workman

I have a ten year old child with Down Syndrome and autism. I am also a pediatrician and have the privilege of serving many families in central texas who have children with special needs. The support from the state as it stands now barely addresses the most basic elements of care. Any further reductions will be catastrophic. I appreciate your work on behalf of these children.

Anonymous said...

Thank you for speaking out for those that can't speak for themselves.

Tamara Ishee said...

I have a 7 year old daughter with Down syndrome. The services she needs now and in the future are critical to our family. Please urge your collegues to oppose cuts to community based services and education. Thank you so much.

CnsmrRep said...

The needs of children with disabilities (special needs) in Texas are enormous. I contend that such budet cuts will adversely affect all chidren with special needs, eitehr directly or indirectly. The time to do something about this is now, and the place and date are at the rally in Austin on March 14th!

See you all there.

Patty Geisinger said...

As our children are living longer with good medical care and advances in treatments, we cannot look backwards at old models of how they will live their lives in adulthood. Locked away from their families and communities, away from meaningful work and recreation, away from the basic right to life, liberty and the pursuit of happiness? This is not the expectation now. Our children and young adults deserve to live in the community and having access to the Medicaid Waiver programs assures that they are free to live their lives to the fullest potential.