Some children may not have advocates in their lives. They may rely totally on the care the state provides. Your comparison to a nightlight is very appropriate. As we face a year of record budget deficits, let us all strive to keep that light burning brightly for these children. Darlene Hello Austin TX Dhello@Austin.rr.com
By Darlene Hello on Welcome to the Journey on 1/31/11
By Darlene Hello on Welcome to the Journey on 1/31/11
As a long time Pediatric Oncology Nurse, I would encourage Representative Berman to explore and offer his support Children's Cancer Research in the state of Texas. The vast majority of Texas children with cancer are treated in our state. Families experiencing childhood cancer need to be in their home community to have the support of family and friends. Every major metropolitan area has an academic children's cancer center similar to St Jude's that is affiliated with the Children's Oncology Group. Additionally, San Antonio is home to the Children's Cancer Research Institute. Please keep support for Texas children with cancer in Texas!!
By MH on Action: Continuing support for children with cance... on 2/4/11
Speaker Straus: The funny thing about kids with disabilities is that most grow up to be adults with disabilities. This is why disability rights advocates support programs and services that cover the needs of people with disabilities of all ages. This session you will have to prioritize what you spend scarce dollars on. We hope you will INVEST IN COMMUNITY. For an Institution and Barrier Free Texas, Bob Kafka ADAPT of Texas 1640A East 2nd St Austin, Texas 78702 512/431-4085 bob.adapt@sbcglobal.net
By Anonymous on From the Texas Speaker of the House on 2/6/11
As my disabled daughter fastily approaches adulthood and will soon enough leave the supportive environment of her highschool; I wonder what does the work reallly know about such a wonderful person she is and will she be respected an individual with full human rights to work and play and truly be apart of the community in which she lives. to be sure that she is respected and honored for her differences and abilities. I hope our legislators will acknowledge the contributions that disabled adults have to offer and will be given the opportunity to learn and grow as any other human being in these United States of America.
By Sharon on Action: Commitment to supporting progressive legis... on 2/6/11
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
By Linda on Action: Working to ensure all necessary support a... on 2/6/11
Senator Lucio's compassion for doing the most he can for those with disabilities is very obvious in the Senate Finance hearings. It is comforting to see how touched many on this committee are in regards to finding the funds needed to continue community supports not just for children but for everyone with special needs. They just need our help in finding where the money will come from. When testifying and telling our stories, he truly seems to have a strong interest in the cause.
By Linda on Action: Working to ensure that children with disa... on 2/6/11
Senator West is another Senator whose heart is in the right place. We just all need to work together to devise a plan for community services for everyone with a disability. I feel the Senate Finance Committee really wants to hear from those affected by these cuts. It is comforting to see their support
By Linda on Action: Work to mitigate impact of any budget cut... on 2/6/11
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
By Linda on Action: Remembering children of special needs whe... on 2/6/11
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.
By Ann on Action: Remembering children of special needs whe... on 2/6/11
Rep Villarreal, I am encouraged by your committment to fight to protect funding for services for children with disabilities. I encourage you to keep in mind that as these children mature, their needs continue and, in some cases, increase. With that in mind, I encourage you to protect and support programs that serve adults with disabilities as well. Thank You.
By Ann on Action: Commitment to work to protect funding for ... on 2/6/11
Thank you for sharing this story Rep. Hardcastle. Each and every day, people with disabilities participate in the Texas workforce. Programs that provide support people with disabilities ultimately benefit all Texans.
By Ann on Action: Sharing a story on 2/6/11
Rep Lucio, Kudos to you for filing the bill on increasing wheelchair accessibility in park playgrounds. Every step we make to break down barriers for individuals with disabilities is a step in the right direction!
By Ann on Action: Proposing legislation to increase accessib... on 2/6/11
People, like me, with disabilities can and do participate in the workforce every day. The contributions we make far exceed the support and accomodation we might require in the workplace. I encourage you to continue to work to protect the rights of workers with disabilities. Also, as a person who requires orthotics, I commend you for recognizing the limitations of many health insurance plans in this regard. You might also find that similar legislation is needed to get insurance companies to cover items that are medically necessary (such as catheters) but that are not covered by policy because they are disposable (and therefore not considered to be 'durable medical equipment.') Insurance companies should be required to provide some level of coverage for these items in the same way that diabetic supplies are covered.
By Ann on Action: Commitment to supporting progressive legis... on 2/6/11
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
By Michelle on Action: Remembering children of special needs whe... on 2/6/11
Thank you Sen. Lucio for your passion for doing the right thing! My son and I, along with other families have been going around this beautiful State of Texas talking to First Responders about children with disabilities; encouraging them to also do the right thing and have the right equipment to take care of our children, if they ever need the services of a First Responder in an emergency.
By Debbie on Action: Working to ensure that children with disa... on 2/6/11
Dear Speaker Straus, It means a lot to us that you are inspired by our dedication to our children. Our children have come so far with past programs, please help our Legislature to see the importance of continuing these programs and supports. Sincerely, Linda Litzinger, parent
By Adopt a Legislator Project on Idea: Reflection on the inspiration of families of... on 2/6/11
When I envisioned and later co-conceived and co-named what became known as: "The Americans with Disabilities Act", I had worked on it from 1964 until January 3, 1968. Indeed, I had boldly proclaimed when I was 13 years old in front of my Synagogue that: "one day I would (help to) change the world", but it took me 3 more years and the study of Law to do so. Back in the early 1960's there was a way to test out of Law School and take the Bar exam; that was what and how I had striven to pursue. I have worked most of my life helping others, and have spent many years trying to figure out a way that "cancer" and other disabling conditions could be woven under the protections of a Civil Rights Law - without success. I have also worked with children of all types - from Special Needs to Gifted, in regular classroom settings and in special small classrooms. Regular Ed is and was no exception. I would try to explain this to so many others, but no one seemed to grasp the complexity of what I was trying to convey. Perhaps one of the biggest motivators for academic excellence isn't just intelligence - it's love, it's family, it's companionship, it's the ability to communicate. Children with cancer need no less. Funding is absolutely necessary and critical for all programs benefitting children, especially children with special needs such as children with cancer. Please do not cut this funding. Your vote, your support, is critically needed in these difficult budget times. It is the right thing to do; it is the American thing to do. It is the Texan thing to do; thank you.
By CnsmrRep on Action: Permission to reference and share an artic... on 2/6/11
For the benefit of my adult daughter funding from the HCS program enables her to experience life outside of home;interactive community day programs in the company of responsible adult caregivers and socialization with her peers, the means by which to attend overnight camps in the summer,therapeutic recreation in the form of dances and educational opportunities and fun events. Altogether,this lifestyle gives her a sense of belonging and brings balance to her family life and without funding,there would be a real void to her everyday existence.
By cynthia on Action: Commitment to supporting progressive legis... on 2/6/11
As a mother raising an autistic child in Texas Public schools, I support any efforts to bring awareness to our legislators regarding the serious lack of quality teaching standards for students with disabilities. While some educators show obvious disdain for being forced to take on the challenge of teaching these kids, others, although willing, are ill prepared and poorly trained. Thank you Mrs. Patrick for your continued commitment to this cause. D. Stark
By Dragon Lady on Action: Working to ensure quality teachers traine... on 2/6/11
Honorable Representative Coleman: I have appreciated your efforts over the years on behalf of all members of the Texas community. I've worked in the area of helping families with children with special health care needs for many years. Although I live in Williamson County, I am encouraged to see that you have provided a report on mental health needs in our state. My husband and I have five daughters; it has been a long road since one developed insulin-dependent diabetes at age two (26 years ago). Then, only five years ago, our oldest daughter developed Multiple Sclerosis at age 25. Tiera and Halla are the youngest sisters and are doing very well. Tiera has just graduated from UNT and would love to put her Sociology degree to work for the community good--like working for FEMA! But I want to speak to you of Annie, our third daughter. She lost her hearing at age one. We, through the grace of private insurance that we followed here to Texas from our home in Colorado over 20 years ago, provided speech therapy, learned sign languages(ASL & SEE), provided hearing aids, a cochlear implant (one of the first done in Austin when she was 8). We were able to learn a sound representation system called Cued Speech, and last year, Annie, age 24, was ordering her own "carmel macchiato with an extra shot of vanilla upside down!" She'd ridden on a helicopter with the "Challenge Air" program, gone to signed performances, when we could find them, of CATS, and Phantom of the Opera, and her favorite, the opera Madama Butterfly--which she enjoyed just like everyone else because of the use of supertitles above the stage. Annie killed herself the day after Easter on April 5, 2010. My heart was shattered. Her father found her body--something no father should ever have to do. Perhaps I will have a chance to share with you the many reasons for her heartbreak-- like being a vulnerable target for predators, wanting to be like everyone else, wanting to hear, have wonderful husbands and homes like her sisters. Maybe I can tell you how hard it was for me to encourage her to use Relay and make her own calls for appointments, etc, only to have people hang up because it sounded like a marketing call when the Relay Operator tried to start the call. Or how she couldn't find a doctor taking SSI Medicaid much less get to stay with the doctors she'd had since she was two. Somehow I can try to tell you how much guilt I feel that I gave her all that I could but I could not find a way to heal her mind to make the right kind of friends (and they were so few anyway) or to not see life as all or nothing. Mostly, I'd like to share a video of the family that loved her as much as we could, of our pain at saying goodbye to a beautiful, loving, and deeply missed part of our family. I never imagined the depth of this loss; although I tried many times when worrying about the long-term effects of Type I diabetes or MS or of a young girl who had tried to kill herself before. Yet the doctor asked the same ten questions in the same ten minutes about having friends, ability to sleep and eat, and dispensing the same medicine she had since earlier attempts. I don't blame the doctor, I don't blame God, I don't blame Annie. I only pray for a system that can embrace hope and empathy for a mother's loss. I pray for the rising death rate of suicide for 16-24 year olds to begin falling because maybe, maybe someone is finally listening to their voices. Thank you for the opportunity to write on this forum. I gladly offer my help to you in any way I can. With all my heart, thank you for your work. Sincerely, Mrs. Linda Phillips Thune Austin, Texas
By L. Phillips Thune on Action: Filed a committee report documenting the n... on 2/7/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/7/11
Senator Lucio's work to ensure that ambulances in Texas are properly equipped and that EMS providers have continuing education in pediatrics including training to care for children with special health care needs is essential not only for children with special needs, but for all children in Texas. There are currently no minimum standards in Texas for equipment on ambulances and many EMS agencies lack essential equipment to care for kids. In addition, continuing education is optional for recertification of EMS personnel in Texas and, when chosen, is too infrequent to be effective in maintaining competency. Children with special needs utilize emergency services, on average, 50% more often than other children, and are more likely to need a higher level of care. Every citizen of Texas has a right to expect that their EMS agencies will be prepared to provide safe, timely, effective, and equitable emergency care for their child whenever and wherever it is needed. Thank you, Senator Lucio, for working hard to establish reasonable minimum standards to improve the preparedness of our EMS system to provide emergency care for children with special health care needs and for all children across this great state.
By Tony Gilchrest on Action: Working to ensure that children with disa... on 2/7/11
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.
By Janice on Action: Remembering children of special needs whe... on 2/7/11
Representative Bonnen, Thank you so much for continuing your work to ensure the best for our community. I, too, have been closely involved with BACH for several years now and can see firsthand the need for so many of these families with children who have developmental delay and/or disability. Their need so often extends beyond just educational and therapeutic needs of the child and into the emotional and financial needs of the entire family who are in direct contact with the child. Focusing on the whole family and teaching them to use the resources in their community and opening their minds to learning new responses to the challenges their child's delay presents will so highly affect the way the family handles future opportunities and challenges in all facets of their lives. Thanks to the many professionals who work day after day to increase the confidence and knowledge of these families to do whatever it takes to help their child achieve his/her highest potential. You all are commended.
By Anonymous on Actions: Support of "BACH;" offering an open door... on 2/7/11
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.
By Firefly on Action: Remembering children of special needs whe... on 2/7/11
Our children are the future. There are so many things in life that they miss out on--but this should not be our focus. The focus should be for them to live the most productive and happy life that is possible. For some, like my son, this simply means being as independent as he can be and that means having an attendant. He is a regular education student who will be going to college in two years. In fact, he is an "A" student who is taking Pre AP math and science as a high school sophmore. I want him to be able to go to school where he chooses and not depend on his parents to dress him, feed him and get him out of bed. He has told me that the most important thing for him is to be able to do as many things as he can without help from family. Without CLASS medicaid waiver, this will not be possible. A nursing facility for a bright young man? No. Isn't it our ultimate goal for those people like my son--to work and be productive citizens and not burdens to the system? Yes. With CLASS, my son can follow his dreams and have a career and a life--and be a tax paying citizen of Texas! Thank You
By Anonymous on Action: Support legislation to maintain current fu... on 2/7/11
Our children are only limited by the limits created by the adults in their lives. They want to learn, they want to grow and to them, anything is possible. To see real courage, you only have to look into the eyes of a child faced with a serious illness or lifelong disability. They are the real heroes. Kathy L. Parent
By Anonymous on Idea: Reflection on the inspiration of families of... on 2/7/11
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!!
By Anonymous on Action: Remembering children of special needs whe... on 2/7/11
As a parent of a child with a disability in your district, I am thrilled to see you acknowledge the need for change here. I am dismayed at the amount of money thrown an inefficient and outdated models of care for those with disabilities in our State. We can and need to do so much better. I thank you for speaking up and showing support for children like mine who just want what all of us want, the ability to live, work and be a part of their community.
By Joy on Idea (Hope): To develop and approve cost effectiv... on 2/7/11
Thank you Senator for your committal to helping maintain and secure the resources needed to benefit our most vulnerable of citizens, those young and old who have intellectual and developmental disabilities. Please continue to speak out for less cuts in the budget that impact this group and their families. We have come too far to go backwards nowe. Thank You!
By Anonymous on Action: Work to mitigate impact of any budget cut... on 2/7/11
I am the caregiver of a disabled spouse with cancer, he worked and supported our family for many years until he could no longer do so. He is also a veteran. I am also raising a son w/special needs, who would like to serve in the military, but probably cannot. I do hope he will be a self-sufficient wage-earning member of society. The services he recieves from the state; CHIP, free lunch, special ed at school, are going to be instrumental in whether or not that happens. We've been on the Medicaid waiver waiting list in Texas for about 12 years. My husband's SS disability is too high for my son to qualify for Medicaid or SSI. Remember when you are discussing the budget, there are real people, elderly, disabled, children, and their caregivers, whose lives and futures you are deciding.
By Anonymous on Action: Permission to reference and share an artic... on 2/7/11
Dear Speaker Straus: Please consider the wide ranging impact that funding cuts will have to children with disabilities from the DARS-ECI program to Medicaid funding for Physical, occupational, speech therapy and waiver programs for children with special health care needs. These children are in a precarious situation to start with, lets not make things even more difficult for them and their families by cutting essential programs and services. Miriam Nisenbaum, ACSW, LMSW
By Anonymous on Idea: Reflection on the inspiration of families of... on 2/7/11
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!
By Laurie on Action: Remembering children of special needs whe... on 2/7/11
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!
By Christine on Action: Remembering children of special needs whe... on 2/7/11
Dear Senator West: Thank you for leading the way in this very difficult budget time. We as a state cannot afford to balance this budget on the backs of the citizens who need the most help, children with disabilities and their families. We appreciate your support. Please continue to advocate for this vulnerable population particularly with funding for DARS-ECI, Medicaid, and Children with Special Health Care Needs (CSHCN) programs and and services. Miriam Nisenbaum ACSW, LMSW
By Anonymous on Action: Work to mitigate impact of any budget cut... on 2/7/11
Thank you so much for your time & concern for our children!
By Anonymous on Action: Commitment to improving basic necessities-... on 2/7/11
Thank you Representative Rodriguez. Children with special needs and their families know that you will continue to support them. As you know, they are often the hidden and more vunerable Texans -- thank you in advance for your concern -- Pam Farley
By Anonymous on Action: Resolving to seek the best interest of ch... on 2/7/11
Dear Ms. Nash, More important than your volunteerism and your support of advocacy organizations is the direct voice that you and your colleages have in determining our state budget. Please consider this when considering funding for TX Medicaid, CHIPs, and DARS. Sincerely,
By Anonymous on Action: Volunteering to support organizations and ... on 2/7/11
Thank you for your time Mr. Straus - please continue to remember our children & help them become happy, independant individuals.
By Anonymous on Idea: Reflection on the inspiration of families of... on 2/7/11
Dear Mr. Berman, More important than your charitable giving is the direct voice that you and your colleages have in determining our state budget. Please consider this when considering funding for TX Medicaid, CHIPs, and DARS. Sincerely,
By Anonymous on Action: Continuing support for children with cance... on 2/7/11
Thank you so much Mr. Zedler - it is most definitely a blessing to have someone with past experience in the healthcare profession helping our children!
By Anonymous on Action: Helping ensure the highest quality care an... on 2/7/11
I have three children. One of them is a special needs child. Texas is suppose to be helping these kids be as independent as possible and according to his outside therapists they are not. My child needs help and cutting the budget around here is just going to make things a lot worse and not better. I try not to go to anyone for the help I need because frankly a lot of the times I don't qualify for help due to the fact that my husband just makes enough for us to live on. But when you add all the requirements of our son we are way short. I don't have access to anything and frankly cutting the budget around here is just going to make it worse, not better.
By Anonymous on Idea: Thinking of the challenges faced by children... on 2/7/11
Mr. Speaker: Over the last 16 years; I have seen families struggle to find adequate services, medical and dental care for their children. Families have to make tough choices everyday.These choices have life long implications. I urge you to become the voice for the least amongst us.Cutting services for children with special needs will be a short termed vision as these children will require more expensive treatment and care in the long run if they go without needed services now. Thank you.
By Eduardo Lara on Idea: Reflection on the inspiration of families of... on 2/7/11
Speaker Straus, All the families across the state that do help their children with disabilities learn, develop, and grow,need you and your colleges help in NOT cutting funds to the programs that help us. Our children, new born to adults, need your help to become and stay independent individuals. Susie Cummins, Parent
By Anonymous on Idea: Reflection on the inspiration of families of... on 2/7/11
No one asks for a disability. Parents pay for a whole, healthy child, not one with a disability. Life happens, but it is up to us to provide for those who did not choose to be "different," whether born that way or who acquired a disability later in life.
By Anonymous on Action: Working to update the AMBER alert system on 2/7/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/7/11
Speaker Straus, Thank you for your comment; all Texas children, of all abilities, should have the opportunity to learn, develop and grow ... and become part of our communities, helping us to develop into a better society.
By Anonymous on From the Texas Speaker of the House on 2/7/11
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.
By Sharon on Action: Remembering children of special needs whe... on 2/7/11
Thank you Senator Lucio for working to protect funding for children with disabilities. I worked for over 20 years in Early Childhood Intervention (ECI) and funding for this program is so important. Providing services in the first three years of life is critical to a child reaching their full potential. Families of young children with disabilities need the support and guidance that ECI provides. Your efforts will make a difference in the lives of Texas children and families!
By Anonymous on Action: Working to ensure that children with disa... on 2/7/11
The majority of children with disabilities are just pure love. But sometimes the only love they get back is from organizations like this. These children need our help and support .Thank God for Down By The Border. Her's hoping they are here for a long time to come.maluctio
By Anonymous on Action: Visiting with children with disabilities a... on 2/7/11
Senator Lucio, I am a former member of the Texas State Council on Autism,and I know you are a supportive legislator about issues of people and children with disabilities. As a member of the Senate Finance Committee, you have the specific knowledge to speak eloquently toward continuing adequate funding for the systems and supports these families need. I trust you will champion these issues during the most certain difficult budget discussions this session. Thank you for being an advocate!
By Sharon on Action: Proposing legislation to increase accessib... on 2/7/11
So many times children with disabilities are left out of the equation when providing for their safety and well being. Please remember these children
By Anonymous on Action: Working to update the AMBER alert system on 2/7/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/7/11
Thank you Rep Rodriguez for remembering our children. Children with disabilities so many times get left behind when it comes to the support and help other children receive on a daily basis.
By Anonymous on Action: Resolving to seek the best interest of ch... on 2/7/11
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.
By Anonymous on Action: Working to ensure all necessary support a... on 2/7/11
Please continue to support disabled families!
By Juli on Action: Proposing legislation to increase accessib... on 2/7/11
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.
I am both a nurse working in the State home for Special Needs individuals and a mother of an adopted special needs child who was my patient. These children need so much more time and money to do simple things that others do every day, like boating, or horseback riding, and many cannot do those things at all. The State workers are the only family they have. I can see SO many other ways to balance the budget other than taking from the elderly and special needs. In my town the "poor" people who are lined up and paying for their food with food stamps leave the store and get in a car that is new with classic wheels and a huge stereo, because families work it where they never marry, but have many children together and give separate addresses to get welfare. I see this often in homecare too. As long as we give more to the "poor" we encourage them to not work. Why can't a person be made to do 40 hrs community service to receive welfare when they say they cannot find work? The special needs REALLY cannot work and pay their way. Please, please quit taking from our special population to give to the lazy. The State is having us adhere to very strict rules, which require many nurses to complete these regulations, but there is a freeze on hiring?????? How can we stay open when the same State who is making us adhere to these taxing regulations won't let us hire the help to make it happen. Something has to give. Lufkin, TX
Thank you Hon. Royce West for your continued support in our district. Please do all that you can to minimize the cuts to the state's most vulnerable, please include adults as well as children with intellectual and physical disabilities. Is it realistic to use the rainy day fund?
By TMN on Action: Work to mitigate impact of any budget cut... on 2/7/11
It is extremely important to remember all individuals with intellectual/developmental disabilities. Often times we: parents, friends, neighbors, etc., are their voices and it's time that we are all heard. All people need to have the same chances for safety.
By Anonymous on Action: Working to update the AMBER alert system on 2/7/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/7/11
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.
By Lynda on Action: Working to ensure all necessary support a... on 2/7/11
Speaker Straus, My granddaughter is now 16, she has cerebral palsy (spastic quadriplegia). She has a beautiful smile and even though she cannot speak she manages to communicate with anyone that takes the time to get to know her. She needs total care. We depend on her Medicaid from MDCP to help with her supplies, formula, feeding pump bags, mickey buttons, diapers, etc. Not to mention wheelchairs, lift, doctor visits and medications. Her mom is a single parent, struggling to make ends meet. Without the help that we currently have it would be very difficult to keep my granddaughter at home. There are no facilities anywhere that we trust to take care of her. Also please remember that our children are growing up into young adults and will continue to need all of our support. It is much cheaper to keep our kids at home with support, than to put them in an institution, if you could even find one that was suitable. thanks Linda
By Linda on Idea: Reflection on the inspiration of families of... on 2/7/11
Fighting to keep funding for our children is paramount. Without funding I would not be able to supply my Son, Colin, with the tools he needs to succeed. I am a professional, but cannot have Colin on my insurance because of his Pre-existing condition. Without MDCP Colin would not have a wheelchair or a stander. He would not have access to Physical therapy, speech therapy or schooling. He will probably never become an independent functioning adult, but his life does have meaning, even if it is only to us, his family. These services make his life better. He enjoys the social interaction, as well as the physical aspects of his day. Without funding these services will disappear. Please continue to fight for our children, without your voice we will not be heard.
By Lynda on Action: Commitment to work to protect funding for ... on 2/7/11
Representative McClendon, Thank you for writing and expressing your support for people with disabilities. I would hate to see the Legislature balance the State budget by cutting funds that provide support for people with disabilities and funds for education. I am willing to pay additional taxes to maintain our education system as well as support services for Texans less fortunate than my family. Jim Lawson
By Jim Lawson - San Antonio on Action: Promoting the well-being of children with... on 2/7/11
There is a saying, "Watch your thoughts, they become words. Watch your words, they become actions. Watch your actions, they become habits. Watch your habits, they become your character. Watch your character, it becomes your destiny." Thank you, Senator Zaffirini, for recognizing the power of words to shape one's destiny. Thank you for valuing the human dignity of our loved ones with disabilities. Thank you for sponsoring this legislation which is long overdue in Texas.
By Anonymous on Action: Eliminating the "R-word" on 2/7/11
I am both a mom with children with disabilities and a professional working with families who have children with disabilities. I appreciate your recognition of these children and their rights as individuals...their contribution to society is beyond measure. Without financial assistance, these children will be unable to reach their full potential. We have an obligation to them, their families and ourselves. If we are a country that values equality- how can we deny these children a chance to succeed?
By Patty Lacey on Idea (Hope): To develop and approve cost effectiv... on 2/7/11
Thank you for helping to protect our children and families. Budget cuts to the supports provided to families and children with disabilities have serious consequences for all concerned...which often lead to even higher costs.
By Anonymous on Action: Work to mitigate impact of any budget cut... on 2/7/11
It is important to understand that the services that children and adult with disabilities are receiving right now are already limited. However, I just can imagine my life without them. As a mother to a child with disabilities, I ask you to support the services that make people with disabilities and their families go on. It just does not make sense to me to reduce those limited services when vulnerable people need them so much. Thank you very much for your support!!!!
By Anonymous on Action: Resolving to seek the best interest of ch... on 2/7/11
I read a newspaper report a few days ago about expected budget cuts for people with disabilities residing in Indiana. Because services for adults with disabilities who are living at home and in group homes are seriously considered to be on the chopping block, parents and caretakers are being warned they may have to put their loved ones in homeless shelters! Could this ever happen in Texas? Please make sure that such horrendous actions do not ever take place in our state. We are not wealthy, but we are responsible, middle-class, God-fearing parents who have invested our lives in the development and future of our daughter, so that when we are no longer around, she will have a life of quality, care and love. Thank you for ALL you are doing to make SURE that we can leave this earth in peace!By Anonymous on Action: Commitment to improving basic necessities-... on 2/8/11
Representative Martinez, our organization is profoundly grateful for your participation and even more thankful for your continued support of children and adults with disabilities. You are a true man of character for speaking up for those with out a voice , standing up for those who are physically challenged and for always asking what else can be done. Thank you, thank you , thank you. Sergio Zarate Down By The Border-Vice President
By Anonymous on Action: Co-authored legislation and actively invol... on 2/8/11
Thank you Senator Lucio, all the children of Texas need to be able to receive emergency responder care and treatment with proper equipment and training. Children with disabilities have even a greater need with the many ongoing health issues they may experience. Thank you for helping raise the standard of care.
By Anonymous on Action: Working to ensure that children with disa... on 2/8/11
Thank you Mr. Guillen for taking the time out of your busy schedule to spend some time with some of our children here in the Valley. You most probably left with an overwhelming feeling of love, something we don't usually experience in our day to day lives. Those of us who are parents of children with disabilities are blessed to have this feelings often. Please remember that feeling when it comes time to decide what budget cuts you will vote for. Isela Wilson
By Anonymous on Action: Visiting with children with disabilities a... on 2/9/11
I am a mother of an 18 year old with multiple disabilities one of them CVI (Cortical Visual Impairment). I ask that you continue to look out for our children with disabilities and that you especially see that VI teachers recieve proper training in Texas. As it stands now any teacher can get certified just by taking a test. You cannot imagine what negative impact that has on our children with visual impairments since sight is the most important sense we have to learning.
By Isela Wilson on Action: Working to ensure quality teachers traine... on 2/9/11
My and I family thank you Senator Lucio for all you have done and continue to do for our children. It is comforting to know that some one in your position is looking out for our children with disabilities. The proposed budget cuts to Medicaid waiver programs would be devastating to our being able to give our son the quality of life he deserves.
By Isela Wilson on Action: Working to ensure that children with disa... on 2/9/11
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!
By Anonymous on Action: Remembering children of special needs whe... on 2/9/11
Thanks so much for keeping these special citizens of our great State in mind. As foster care providers for our 2 adult daughters, we keep them involved in and contributing to our community. We take wonderful of them for a small fraction of the cost of having them in a state school or group home. L and C are happy, healthy, awesome young ladies. Thanks for helping us take care of God's beautiful creation and His loving gift to us.
By G and B from Fbg. on Action: Work to ensure resources and supports on 2/9/11
Marva Beck has been a good friend to Junction Five-O-Five and the consumers we serve. She recognizes the value of giving individuals with disabilities the opportunity to be productive, tax paying citizens. We are so fortunate to have her support and representation. Thank you, Marva! Iris Woolley, J505 Director
By Anonymous on Action: Support of "Junction 505" in Bryan/Colleg... on 2/9/11
Thanks for your support, ma'am.
By Rachel on Action: Support of "Junction 505" in Bryan/Colleg... on 2/9/11
By Rachel on Action: Support of "Junction 505" in Bryan/Colleg... on 2/9/11
Thank you for your support of quality services for the 12% of Texas children who have special health care needs. Without these evidence-based services, children will be considerably less able to progress in school and in life.
By Pat Pound on Action: Proposing legislation to increase accessib... on 2/9/11
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.
By Claudette Fette on Action: Working to ensure all necessary support a... on 2/9/11
By Claudette Fette on Action: Working to ensure all necessary support a... on 2/9/11
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.
By Claudette Fette on Action: Working to ensure all necessary support a... on 2/9/11
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.
By Margie on Action: Working to ensure all necessary support a... on 2/9/11
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.
By Colleen on Action: Remembering children of special needs whe... on 2/10/11
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.
By Jennifer on Action: Remembering children of special needs whe... on 2/10/11
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!!
By Patti on Action: Remembering children of special needs whe... on 2/10/11
The time for the rainy Day fund is now. Although pictures of children with mental illness would not reflect their disability their needs are very real. We must support those inexpensive activities that we know work. Activities such as TIFI, CRCG, Communities in Schools and children's mental health crisis centers are basic staples for our children and truly save multiples more money than the programs cost our state. We have saved for this catastrophic time please use the rainy day fund for our children
By Patti on Action: Promoting the well-being of children with... on 2/10/11
By Patti on Action: Promoting the well-being of children with... on 2/10/11
Rep. Anderson, thanks for your leadership to expand the Amber Alert to include adults with intellectual disabilities. CTD/Coalition of Texans with Disabilities
By Anonymous on Action: Working to update the AMBER alert system on 2/11/11
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.
By CTD/Coalition of Texans with Disabilities on Action: Remembering children of special needs whe... on 2/11/11
Mr. Speaker, Families of people with disabilities are indeed inspiring, particularly in their devotion to the family members. Many leverage state services with considerable amounts of time and sacrifice. Please support no cuts to community services and permit these families to continue their care.
By CTD/Coalition of Texans with Disabilities on Idea: Reflection on the inspiration of families of... on 2/11/11
Rep. Nash, The proposed budget cut of $16B to health and human services will decimate those organizations you admirably assist as a volunteer and the people with disabilities they serve. I hope you will consider following your heart and speak out publicly to support no cuts to community services.
By CTD/Coalition of Texans with Disabilities on Action: Volunteering to support organizations and ... on 2/11/11
Rep Bonnen, The proposed HB1 includes a cut of $132M for health & human services in Brazoria County. BACH and other local organizations will surely be impacted. Your open door is great, your active support to oppose these cuts will be critical help to keep the front door open at BACH and other Brazoria organizations.
By CTD/Coalition of Texans with Disabilities on Actions: Support of "BACH;" offering an open door... on 2/11/11
Mr. Speaker, My son has a lifelong disability. Our family has been waiting for CLASS assistance for over 7 years, now it looks like we (along with 100,000 others in Texas) will wait even longer due to proposed budget cuts. It is crucial to support community-based living for Texans rather than continuing to fund State Supported Living centers - the cost savings by moving to community-based supports is 4 to 1. Funds saved can be moved to assist the 100,000 folks on waiting lists. If asked, I think you will find that most of the people currently in State schools would prefer to be members of their community. Shane Walker, parent
By Shane Walker on Idea: Reflection on the inspiration of families of... on 2/11/11
Senator Zaffirini, you are well known for your commitment to children and families. I suspect you are building a strong rationale for keeping the funding for special needs children and adults a high priority in this next budget. We are counting on you to continue the fight for people who cannot fight for themselves without US.
By Anonymous on Action: Eliminating the "R-word" on 2/11/11
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.
By Tena on Action: Remembering children of special needs whe... on 2/12/11
My name is Amy Connor and I live in Austin with my husband and our daughter. Our Daughter Elana is 31 years old and has multiple disabilities. She has seizures, coordination problems, communication issues, and behavior issues. She cannot be left alone ever. At the same time she has exhibited art in numerous places including City Hall. She has written and performed in a play with VSA here in Austin. She contributes every day to people she meets with her big heart to welcome them regardless of how they perceive her. She is on the waiting list for HCS and/or CLASS services and will probably remain waiting for about ten years. I work full time for the State of Texas and my husband is a teacher at several institutions such as Austin Museum of Art and the Austin School of Film. Because we both work we pay people out of a small trust for Elana to be with her and join with her in activities in the community for over forty hours a week. It adds up to a lot of money. As long as we have lived in Austin, outside of Public Education, Elana has received no services from the state. Everything Elana does has come out of her small trust. Without funds or services from the state Elana would be without help to be in the community. The state cost for services at the state school or state hospital is about one hundred forty thousand dollars a year. The state cost to help her live in the community is about one third of that. I have heard that people are being asked “what funds should we use to pay for services “ because we have a budget shortfall in the state. To us it doesn't completely make sense to have 13 institutions up and running at a cost of about 4 billion dollars per institution. The buildings are not at full capacity and the mere cost of operating the building is astronomic and , in our opinion short sighted. We have heard that the lobby of parents of people whose family members are in the institution is extremely strong. Institutionalizing their loved ones however has come at a high cost for a greater number of people than those housed in the institutions. These families go about their business, take vacations, go to their jobs, without worry, but at whose expense. It simply does not make sense to not fully house institutions and then pay for the cost of upkeep. We think it's time legislators thought about what makes sense for the majority of Texans while preserving the care and safety of those who have special needs and this is my answer to the question of funding. It is time to consolidate and close some of the state facilities. If the money from this savings was passed on to fund home and community services, it would serve to shrink the waiting lists and to fund people who are already receiving services.
By Anonymous on Action: Visiting with children with disabilities a... on 2/12/11
As a constituent of Rep. Fletcher, I support his efforts to have Dyscalculia recognized in law in Texas. Furthermore, I urge all lawmakers to maintain current levels of support for DARS, and consider more than simply a "cuts-only" budget. I teach adults with Down syndrome weekly, and the HCS support helps them continue their education and remain in the community-far more cost efficient than a state school.
By Ann P. Fontenot on Action: Working on legislation to assist students... on 2/12/11
Thank you for keeping our 22 year old son in your thoughts during these trying times. Keeping our son in the community, rather than an institution, has huge payoffs for our family, as well as the state. Shortsighted budgetary constraints can lead to devastating, life-long damage that the state will eventually pay for, without your continuing advocacy for our children.
By BessAlthausGraham on Action: Work to ensure resources and supports on 2/12/11
Rep. King, Our most vulnerable Texans with disabilities are at risk of losing vital services during this Legislative Session. My heart aches to think what the outcome will be if these cuts come to fruition. Please consider use of the Rainy Day Funds to offset these losses. I know your task will be difficult as you move to balance the budget, but please continue to show your compassion in ensuring the quality of life for our children, aging, and individuals with disabilities.
By Anonymous on Action: Sent a hand-written letter in response wi... on 2/12/11
Thank you Rep. Rodriguez for your kind words and support. The services my son receives through the CLASS program has given us hope for a hopeless situation and happiness in a life filled with challenges and future anxiety.
By Anonymous on Action: Resolving to seek the best interest of ch... on 2/12/11
Thank you Representative Kolkhorst, 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.
By Anonymous on Idea: Holistic approach for state policies based u... on 2/13/11
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. [posted on all 37 Legislator statements]
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?
By Joseph Meyer on Action: Remembering children of special needs whe... on 2/13/11
Thank you for taking such a strong stand for children, seniors and people with disabilities in our communities. I appreciate that you are front and center in the fight to save funding for education and human services. Your leadership is making a difference. Cynthia Hamilton
By Cynthia Hamilton on Action: Commitment to work to protect funding for ... on 2/13/11
I am very concerned about the impact that further budget cuts to health and human services will have on communities throughout Texas. Any reduction in funding for services to people with developmental disabilities has the same impact as raising taxes on this population. During this budget crisis, please do not ask those who have so little to give so much. Their very lives depend on the physical and financial support of others. People with disabilities have value and they add value to our lives, as well. I can’t help but notice that the proposed budget cuts have the most negative effect on people who are the least able to speak up for their rights – children and people with disabilities. There is a growing number of citizens, like me, who believe that an increase in taxes on all but the poorest in our society should be part of the solution to our state and national budget deficits. It is time we spoke up, no matter how crazy we sound when we say we want higher taxes. My prayers are with you and your colleagues as you struggle through difficult decisions. Please make your goal to create a more efficient and effective government – not just a smaller one. Cynthia Hamilton
By Cynthia Hamilton on Idea: Reflection on the inspiration of families of... on 2/13/11
I appreciate the Speaker's comments. As a parent of an Autistic adult I would like him to think about the help we receive from the various providers of the HCS programs. At a time like this I hope the Speaker will help ensure their budgets are not eroded. The Rainy Days fund is for times like this and must be tapped to help in the financial crisis that we now face. The mentally handicapped cannot be asked to share the burden. Many parents like me are already doing our best by caring for difficult children instead of sending them to the Institutional care that would cost the State a lot of money. Cutting funding for the HCS Programs and to the providers is a receipe for more people going to institutions and getting a lesser care for much more funding. I hope this arithmatic is understood by our legislators and if the Speaker would take the prestige of his position to impress on his colleagues to minimum maintain the funding for the HCS programs (I assure that we need more funding to improve quality of service and there is no good program for Autistic adults especially in Houston). Thanks for his kind words and we now await action from the legislature.
By Sundaresan on From the Texas Speaker of the House on 2/13/11
Thank you for supporting our children and families with special needs.My son is now 23 years old.He has a serious health condition †hat many succomb to in childhood.I am certain that because we have been fo†unate to receive appropriate supports for him, that he is still with us today.He graduated from high school last May and is currently going †o community college and doing volun†eer work on a part time basis. None of this would be possible without having the state funded he has. I am certain that without the support, he would not have survived to this age.I hope to be able to continue to have him participate as a part of our community. Thank you so much for your support. evanwhitesmom@gmail.com
By evanwhitesmom on Action: Work to ensure resources and supports on 2/13/11
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 [posted on 2 Legislator statements]
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. My son is a Special Olympics athlete and my husand is the team's coach. I sit on the Board of Directors of the Down Syndrome Association of Houston. We are involved in the community. We are involved in our son's life. Please remember that each cut that is made is a cut to a person's services.
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. [posted on 3 Legislator statements]
By Belinda Gaddis on Action: Working to ensure all necessary support a... on 2/13/11; By Belinda Gaddis on Action: Remembering children of special needs whe... on 2/13/11; By Belinda Gaddis on Action: Visiting with children with disabilities a... on 2/13/11
Rep Ryan Guillen Thank you for your support in helping our children in the Rio Grande Valley. My husband and I have a 9 year old son who is blind due to ROP with development delay. He has been on the waiting list for HCS and/or CLASS waiver program since he was three years old we feel that with any budget cuts to this funding it will take more years for our son to get services soon. Thank you again for your support. Christina Silva
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.
Sen Eddie Lucio Jr. Thank you for your support. Our children with disabilities and their families need to be protected by any state's budget cut. Our son who is blind and has developments delay has been on the CLASS waiting list for 6 years. Thank you again for you support.
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
Thank you for your ongoing concern for children and their families. NAMI Austin salutes your compassion and welcomes a chance to work with you to find ways to meet the budget challenges, Cathy Weaver
You responded to my message before Senate Finance Com't that people with mental illnesses also face stigma in Texas. More can be done with existing funds to provide care for those in psychosis and loss of memory. We are counting on your help in breaking down the barriers to compassion for the millions of Texas families who experience mental illnesses each day, Cathy Weaver, NAMI Austin
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. Gilda
Mr Speaker: Thank you for your recognition that Texans with disabilities rank high with you, but low in state priorities. We are counting on your leadership this session to find ways to help Texas families survive, while saving Texas tax dollars. Through NAMI (National Alliance on Mental Illness)Texas, I advocate for families who face the stigma of mental illness. Mental illness is physical, like all other diagnoses. We need your help this year. We say shift dollars from punitive measures to preventive measures, and provide every possible resource, including Rainy Day funds, Cathy Weaver, NAMI Austin
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!
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. Sincerely, Cecilia Navarro Tanner ceci.navarro40@gmail.com
Dear Mr. Speaker: 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. 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 ceci.navarro40@gmail.com
Thank you Senator Lucio for your commitment and dedication to individuals with special needs. May God bless you and give you His favor in all you do.
By Cecilia on Action: Working to ensure that children with disa... on 2/14/11
Dear Rep. Marquez: As a citizen of El Paso County, 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 ceci.navarro40@gmail.com
By Cecilia on Action: Commitment to protect and improve quality ... on 2/14/11
People with developmental disabilities can thrive outside of institutions. I have worked in group homes where I see people working, learning something new, staying healthy and feeling good. Institutions are not places where people are learning and maintaining good health. I have worked in the field of human services to people with disabilities for over 18 years and I can tell you that their lives outside of an institution are meaningful and happy. Many of the people I have served may not be able to verbalize the words "hope" and "contentment" but you can see it in their faces.
By Anonymous on Action: Working to update the AMBER alert system on 2/14/11
The life lived by a person with a disability means so much more than one might think. It is our duty as Texans, not only to protect the lives of our most vunerable citizens, but in doing so, allow them to live a life that is as fulfilling and independent as it can be. Taking away community programs means taking away the life someone could live outside of an institution. It will not save Texas money. I have worked in large for- profit group homes. I know the daily rate these companies receive. This money is much better spent, allowing them to live in small settings where there are four to five people. These people in small settings are healthier and happier. This means less burden in medical costs. Some may not be able to verbalize "hope" and "contentment" but you can see it in their faces.
By Anonymous on Action: Sent a hand-written letter in response wi... on 2/14/11
My family and I waited 7 years for a spot in the CLASS program. This program is vital in being able to care for our son. My husband and I cannot make ends meet--without both of us working. We could never afford to pay for a private attendant. We are not destitute so we could not qualify for regular Medicaid. What would we do without CLASS? I don't know. This is a regular education student who is a sophomore in high school making all A's. Should he be denied making a contribution to Texas, because he can't get out of the bed? This is a bright young mind who will someday be a tax payor. Without CLASS he could not contribute and give back to Texas.
By Anonymous on Action: Commitment to improving basic necessities-... on 2/14/11
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. The provider of his services is in Kingwood. 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! [posted on 4 Legislator statements]
By Tamara Dixon on Action: Working to update the AMBER alert system on 2/14/11; on Action: Commitment to work to protect funding for ... on 2/14/11; on Action: Resolving to seek the best interest of ch... on 2/14/11; on Action: Remembering children of special needs whe... on 2/14/11
Thank you for your support of Texans with disabilities. I agree that the need for community involvement is hugely important. I also believe that is is vitally important for these individuals to remain in the community setting, and not have to end up in more costly state run institutions. My nephew is a young man who is living in a community based center, where he can participate in vocational training and education in a safe environment. This is where we would like for him to be able to remain, but currently there are proposals before you that may make this an impossibility. Please consider the needs of these young adults when faced with the new proposals that would decrease available funding to those like my sweet nephew, Joshua. Thank you so much for you consideration in this matter! L Conner
By Anonymous on Idea: Holistic approach for state policies based u... on 2/14/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/15/11
As a parent of a young adult with significant disabilities, I am still amazed at the decision of our lawmakers in deciding to cut funding to programs that already require parents to wait well over ten years to obtain services because of the overwhelming need elicited by families across the state of Texas. I have struggled to find service providers, and to make ends meet. I am a parent who works three different part time jobs in order to keep my family going and to be able to provide care for my son. I am active in driving him to therapy each week, turning down full time employment in order to utilize those few providers in my area who offer the therapeutic services he needs. Receiving services from CLASS or HCS does not mean that you are given an easier life, or that you are no longer a participant in your child's care. It provides the much needed help and relief that goes with caring for a child with disabilities, it helps to keep our kids healthy, and interacting with the community in which they live. Reducing spending in these areas will in effect roll back the progress this state has made to the time when institutions were functioning again. But we all know that these institutions will not be opened to meet the need, and our family members who need services with be forgotten, and considered nonessential because their worth cannot be measured according the almighty dollar that is being spent on them currently. The other consideration that I would hope that everyone would make is the quality of life that can be given to our kids. We know that many of them once graduation or aging out of school services occurs, they will be launching back into the home after experiencing a school career for over 18 to 22 years. It resembles having a place employment for over 20 years and one day being told you are all done. There is nothing for this population to look forward to. A life of social interaction during school is taken away and then if they are fortunate enough to receive services from HCS or the CLASS program their interaction with others is based solely on individuals who are paid to be involved with them on a daily basis. We as parent's of children with significant disabilities are asking that our child's worth and contribution to society be thought more of the in dollars and cents, but in the promise of a life that involves opportunities and experiences. Everyone will be affect by a disability at some point in their life, the decision made in regards to funding services to people with significant handicaps will be the foundation to how people with differences are considered in the future. Keep our funding and help us give our children a life that is respectful and dignified.
By Anonymous on From the Texas Speaker of the House on 2/16/11
Marva, Your contributions to Junction 505 are a tremendous help. Your support helps to point out the importance of giving people with disabilities the opportunity to be contributors to society and building independence. WE THANK YOU. Keep up the good work. William Cary Junction 505 Board Member Mayday Challenge Co-Chair 2009 & 2010
By Dan on Action: Support of "Junction 505" in Bryan/Colleg... on 2/20/11
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
By Anonymous on Action: Working to ensure all necessary support a... on 2/21/11
Thank you for your support!My son needs every program that the state provides for children with disabilities. John Delgado
By john on Action: Working to ensure that children with disa... on 2/21/11
My daughter was born 12 weeks early. Feeling that her life is valuable, her hospital pulled out all the stops to save her. She survived this with cerebral palsy (a form of quadriplegia). Studies show that if one sits by age 2, they someday walk; if not, they never sit. She never gained the ability to sit. My husband has worked for 42 years for the phone company; I worked there for 17 years there but quit when our daughter aged out of after-school care. I became a volunteer and scout leader. We have had a life of lifting her, bathing her, taking her to the bathroom, feeding her, being her homework scribes, driving her to thousands of therapy sessions, getting her through surgeries, purchasing wheelchairs, lifts, ramped vans and other durable medical equipment. She has been a very dedicated student, dictating every word of work, both to us and to a computer. She graduated from high school with eight AP courses. She attended four years of college, graduating with three humanities majors, by dictating every paper. Her campus job was to work in the writing center, helping students to develop their papers. She has become very valuable to her church, the theatre community, and the disability community. She has served on important advisory committees in Texas and in Washington DC. After college, she found a part time job which doesn’t begin to pay for attendants, surgeries, equipment, or cost of living. What services have she received from Texas? Halfway through high school she came to the top of a waiting list for CLASS attendant care. This was valuable because her college day was so long. Seven years later, it looks like these supports that get her out of bed, to work, and through her day are in jeopardy. Now I have a few questions. Why would Texas count her life as valuable at birth, but not as a hardworking, gifted young adult? Why is Texas educating students with disability well under IDEA and 504, yet is willing to send them to institutions as they graduate ---especially when CLASS costs a third of an institution? Why would Texas give services to a child when their parents are in their fifties and take it away when they are in their sixties and seventies? As you think of people on the interest list, and often assume they are not qualified, think of them as being so disabled that they will never sit. Think of their parents as ‘hardworking’ and ‘exhausted’. For a child who has finished their education, remember current successes of having been educated under IDEA; don’t assume a previous, uneducated generation. Consider these young adults to be extremely valuable to the community, to the tax base, and to Texas. They have no place being locked away in an institution. Use the rainy day fund and raise revenues! [posted on 2 Legislator statements]
By Anonymous on Action: Working to ensure that children with disa... on 2/21/11; on Action: Sent a hand-written letter in response wi... on 2/21/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/21/11
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.
By Anonymous on Action: Remembering children of special needs whe... on 2/21/11
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~
By Anonymous on Action: Remembering children of special needs whe... on 2/22/11
Yea!! I love the previous posting & agree completely. Our children can be productive members of society with the right services & supports. Use the rainy day fund, if necessary. By Cecilia on Action: Working to ensure that children with disa... on 2/22/11
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.
By Rebecca on Action: Remembering children of special needs whe... on 2/23/11
Thank you for your work for children with disabilities and their families. Remember that children grow up - and adults with disabilities need your support as well. My daughter is 29 yrs old. She was born legally blind, has an intellectual disability, and has multiple serious medical issues. But even with all that, she is living a surprisingly independent life. She currently lives in a group home. She works a real job, she's a member of a church (and works in the children's ministry there) she volunteers three days a week, and her hobbies include acting with a community theater group. All of this is possible with her current supports. But if the proposed budget cuts go through - my daughter's group home provider will go out of business. Where will she live then? The State School would cost this state *three to five times* what her group home costs - and she would not be able to work, go to church, be a volunteer - in short, she wouldn't be the asset to society that she is now, she would be a burden. Slashing the budget for community living options and supports makes no sense - either fiscally or socially. I urge you to reject the budget cuts, and support using the Rainy Day fund and/or increasing "sin" taxes to fund these critical services. Thank you, for all your work on behalf of individuals with disabilities.
By Kelly on Action: Work to ensure resources and supports on 2/26/11
Everyone can live in the community. My severely disabled son age 37 with autism and multiple issues is now living in his own apartment with section 8 housing and companion care through HCS. I am totally in charge of him. Friends are helping. Community is possible and don't let anyone say that an individual is too disabled to live in his own place, not necessarily in his parents home. I am a senior citizen with few relatives. Who will care for my son when I am gone? I am praying that what I have designed will do the trick. If we go to six bed group homes then what is to stop us from turning them into larger ICFMR institutions and soon we are back to square 1...opening more big institutions. Martha
By Martha on Action: Commitment to supporting progressive legis... on 2/27/11
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.
By rahel on Action: Remembering children of special needs whe... on 2/28/11;
I love this! We had a best buddies walk at the University of Texas this morning with the underlying mission to end the R-word. This platform is incredible.
By Anonymous on Action: Eliminating the "R-word" on 3/6/11
I am a service recipient of a state funded program called Client Managed Personal Attendant Services (CMPAS) since 1995. For 33 years I have used the services of an attendant to help me with my basic needs, getting out of bed into my wheelchair , dressing, showering, etc. Because of the freedom of independent living for persons with disabilities and having and attendant be my arms, legs and muscles, I have been able to be employed for 26 years, full-time and giving back to my community by 1) providing an employment opportunity at $7.25 an hour (state wage) for an attendant job--(it is really sad when you have to compete with fast food chain wages for personal care wages) , 2) having an employment opportunity available for people who have the compassion but not necessarily the skills needed or desired to work in the competitive world. 3) Paying a co-pay, investing my hard earned wages back into the very program that support my attendant needs; 4) spending my income in my community, paying sales tax, gas tax, franchise tax, property tax, etc to support the economy and 5) I am able to volunteer hundreds of hours a year to benefit the community and to fill my passion for my community. All this because I have the freedom to live in my own home and have attendants that help me to achieve all this and more. My program services thru CMPAS are slated to be cut by 50 percent. So the cost impact will be nursing home costs, unemployment of me and my attendant, the loss of my self-directed care, activities, dignity, loss of tax revenues, volunteer hours, and basically a liability for the state. The cuts are not recognized on the surface but go deeper and damage the economy in more ways then one might think. I am but one of hundreds across the state at risk. No cuts means better balance, no cuts mean freedom and revenue generation, and no cuts to hurt the very citizens that work so hard to keep Texas working. [posted on 2 Legislator statements]
By Nancy on Action: Meeting with care providers on 3/12/11; on Action: Commitment to supporting progressive legis... on 3/12/11
Dear Speaker Straus, Thank you for taking time to comment on the nightlight in support of families. Please take time to remember as well that these children are growing into adults many of whom will always need the continued support of their families and communities. This is frightening to many of us parents, we count on your support to continue in our efforts to provide safe and meaningful lives for our children. Respectfully, Susan Skyler, Parent
Thank you Senator Lucio for your attention and compassion. You truly make a difference to us on a personal as well as a professional level. Respectfully, Susan Skyler
Dear Senator Watson, Thank you for your support of the ARC and the respectful treatment of people with disabilities. Please continue by supporting the families that care for their members that are disabled or elderly. As the mother of a 25 year old young man with severe disablilites the job never ends. Respectfully Susan Skyler
Dear Senator Zaffirini, Thank you for your long standing support of families and individuals with disabilities. Like your support our job caring for our family members is unending and will not go away no matter what budget decisions are made. Respectfully, Susan Skyler
Thank you for speaking out for those that can't speak for themselves.
Thank you Senator. We appreciate you being a strong advocate and voice for those that don't speak due to disabilities. We will continue to support you as you support us!
Dear Rep.McClendon,Thank you for your service and your commitment to serve all the people,especially those with special needs. You see,my daughter is one of those,whom without state funding will lose her quality of life in the community,which enables her to grow,learn,and be a part of society that she so desperately strives for every day. There are so many others like her that I hope the legislature will not forget.
Hon.Sen.West,Yes,your are a fine example of someone in power that does not forgot the vulnerable like people with disabilities. My special needs daughter and I appreciate your advocacy on her behalf,and we hope you will continue to impress others that you serve with that Texas will lead by example and not make cuts into funding for those programs that serve these uniquely different members of society.
Dear Senator Watson, I am writing to share with your office just how essential services for the aged and disabled are to my family. I have an 18 year old son who is profoundly disabled and requires constant care. My son has no volitional movement, is blind, non verbal, eats by g-tube and as far as we can tell has severe cognitive impairments. Before my son came up on the waiting lists for Medicaid waiver services we provided his care virtually unassisted. In the early years I rarely slept more than a few hours at a time. I lived in a constant state of trauma and exhaustion. During these years, I recall my greatest luxury being the occasional hour or two of respite, just enough time to sit in a cafe, have a cup of coffee and gear up for the next round of care. Medicaid waiver services, in particular CLASS, Consumer Directed Services and CCP, changed my world. Sleep became something I could count on on a more regular basis. I was able to get an MBA from UT and eventually started my own business working out of my home. Working from home has enabled me to make a good living while still having the flexibility to manage my sons care and respond to emergencies. There is no fluff in the services my son receives. Virtually every cent spent on him goes to direct care. Without this support I could not work. Worse, without this support I would go back to being a shell of a person, sleep deprived, exhausted, without the ability to envision anything other than how to get through the next hour, the next day. Worse even still, without waiver services, there could come a day when my own personal survival and thus that of my son's might require that I institutionalize him. Such a step would ensure my survival but at the cost of my sanity and my heart. Do we as a state want to do this to families? Children like my son are a product of our medical system, a system that saves lives at all costs and then hands these lives, regardless of the future implied, back to their families. Is it right to then abandon these families? None of us individually created our medical system. Yet any one of us could individually be left to care for a family member who is not "terminal" but has intense chronic care needs. I believe in caring for the least amongst us. Above all other messages, Jesus emphasized the importance of caring for the poor, the weak and the oppressed. But no matter your faith, there exists a powerful mandate to provide care to this new class of medically fragile but profoundly impaired people, a class that is the product of our collective advanced technology. I am praying that in these challenging times, the Texas Legislature finds the wisdom to focus on valuing and supporting all of God's children, especially the least amongst us. Sincerely, Sarah Bird
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. [posted on 2 Legislator statements]
By Tamara Ishee on Action: Remembering children of special needs whe... on 3/13/11; on Action: Resolving to seek the best interest of ch... on 3/13/11
Thanks so much for all you have done. I can't wait to see it on the floor for a vote. My 7 year old daughter with Down syndrome and I will be celebrating!
Thank you so much for caring about our children. They are all angels from God. My 7 year old daughter with Down sydrome is a blessing to our family. She has taught us how to find the pure joy in life! Please urge your fellow legislators to oppose cuts to critical services for our families. [posted on 9 Legislator statements]
By Tamara Ishee on Action: Commitment to improving basic necessities-... on 3/13/11; on Action: Promoting the well-being of children with... on 3/13/11; on Idea: Thinking of the challenges faced by children... on 3/13/11; on Action: Working to ensure that children with disa... on 3/13/11; on Action: Taking responsibility to stand up for chil... on 3/13/11; on Action: Co-authored legislation and actively invol... on 3/13/11; on Idea (Hope): To develop and approve cost effectiv... on 3/13/11; on Action: Commitment to supporting progressive legis... on 3/13/11; on Action: Resolving to seek the best interest of ch... on 3/13/11
Thank you so much! Education and inclusion is so critical for our kids.
My family, along with the many other Texas families who have family members with disabilities, thank you for making this commitment to protect state funding for services for children--as well as adults with disabilities. My 22-year-old son with multiple disabilities will be graduating from high school this coming May. Without the CLASS waiver services he obtained last summer (after a seven year wait), I would have to quit my job to stay home with him. And because my family needs the income and benefits from my job, I would have to seriously consider nursing home care for my son--which would be heartbreaking for all of us and far more costly to the state than waiver services. Your hard work is greatly appreciated and makes a huge difference for good for many families like ours.
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.
Thank you for your ideas. I have been an advocate for children and all people with disabilities for over 25 years, especially but not exclusively in the schools in Texas. In the Houston Independent School District we were looking into making all playgrounds and playground equipment fully accessible way back then. Rod Paige was HISD's Superintendent at that time, and we had a willing ear to listen to our discussions and requests. And now we have Rep. Lucio. Bravo! Everyone's voice is needed in this. It is not a partisan task, but rather one of accessing top statewide priorities. If ever there was a wrong moment to run out of time, however, it is now. Today's rally should be a show of commitment to the belief that what shouldn't be cut are services to the needy and to (our) children.
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.
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.
Your vision, leadership and support for the disabilities community is greatly admired. Thank you for your decades of support and dedication. Your personal story regarding your son was inspirational and even today to common.
By Anonymous on Action: Eliminating the "R-word" on 3/14/11
Both my Senator and Representative have both chosen not to respond to the request for comments for the Nightlight Report. Senator Nelson and Representative Geren represent me. Senator Nelson is the chair of the HHC Committee.
Both my Senator and Representative have both chosen not to respond to the request for comments for the Nightlight Report. Senator Nelson and Representative Geren represent me. Senator Nelson is the chair of the HHC Committee.
My name Michelle Dooley and I have a 26 yr. old son Morgan that lives in Denton in a HCS group home. He has been there now almost 8 years. Morgan lived at home until he was 16. He is 6’2 and a very big man. He was exhibiting behaviors that landed him in the North Texas State Hospital . He hurt me and was so out of control that the police broke down my door to get to him. I had locked myself in my closet until I heard the police coming down my hall and I could hear them calking their guns. I jumped out of the closet and met them to let them know Morgan did not have control of his actions. I was crying please don’t shoot my son. I was taken to the hospital and Morgan was taken to JPS Hospital. He stayed there for about 2 weeks and then he moved to North Texas State Hospital . I followed the police car that took him there and did his intake. His Dad meets me there and we were told we were the first divorced parents to do this together. We both love our son very much. This was the first time Morgan had ever been away from home.
This starts a long journey from this time on. I went to see him every weekend he was there and he stayed for 4 months. He had been and the waiting list for his HCS slot and I knew as soon as he was admitted to ask for his slot and he got it. I picked a provider in Tarrant County for home services. The night before I was to bring him home the director called me to let me know he did not feel like they could serve Morgan. So I went to pick Morgan up to bring him home with no help.
Something was very wrong with him the longer he stayed at home I did get a provider but Morgan just was not doing well. He could not sleep and he wanted to be on the move all the time. Later I found out he had Post Traumatic Syndrome. I was still having a hard time with him. This is when my local MHMR Center tells me that Austin State School could take Morgan for a short time. He was there for 3 months were he would not get out of bed for most of the time. I went down there and went to eat with him and they gave everyone spoons to eat with. The furniture was bolted to the floor and it was just very sad. I found the only provider that would take Morgan coming out of Austin S.S. The placement was not good at all.
That is the beauties of Community you have the choice to change. That is when we found a provider in Denton . I talk to Morgan everyday and I see him almost every week. He goes to Austin with me to advocate for himself. He has no speech but boy he gets his message across. He loves to go to the movies and out to eat. He rides at Sprit Horse and has been riding 3 years now. He goes to the park and he loves Six Flags and has gone there most his life. Morgan has always lived in his community and he wants to stay there. I believe that this is evident as his level of need (9) decreased to a (5) once in a home he felt safe in.
By Michelle Dooley on Placeholder Posting at 8:51 PM
I am a parent of a special needs child. We have utilized and relied on many of the service that are to be cut. I tried working full time to support my family, but it was nearly impossible to do that. This was due to all the constant surgeries, doctor's appointments, home therapy, etc. for my special needs child. I cannot stress enough how vital programs like DARS, Medicaid, and special education is to my family as well as countless other families and individuals throughout Texas. Please, I urge all legislatures to reconsider the major financial cuts to these programs. Please, somehow, keep these programs available to the people that need them. No parent is prepared for raising a child with special needs. It's a growing process and programs like DARS, Medicaid are crucial to families succeed. So tomorrow, on April 1st, 2011, please vote for no cuts to these very important programs.
People who are not caregivers for our special children or anyone with disabilites could never know the cost and extreme difficulties that familes endure. I pray that the families will continue to get the support that they truly need. [posted on 4 Legislator statements]
By Anonymous on Action: Commitment to supporting progressive legis... on 3/28/11; on Action: Meeting with care providers on 3/28/11; on Action: Dedication to help MHMR centers; Legislat... on 3/28/11; on Action: Support legislation to maintain current fu... on 3/28/11
Sir, You are truly a champion in supporting the rights and opportunities of Texas citizens with disabilities, and the elderly; and working to fix the injustices against the citizens disguised as good laws, but actually not in their best interests. Frank & Chila on behalf of GRADE.
Representative Lucio, thank you so much for supporting the rights of disabled and elderly, and working to fix bad laws that rob them of quality of life; bad laws that plunder their estates and resources of family and friends in order to line the pockets of players; bad laws that drive a wedge between elderly/disabled and their family/friends for the benefit of paid guardianship companies. Frank & Chila on behalf of GRADE
This site offers an excellent opportunity for us to learn about our congressmen and women's feelings even if there they cannot express a committment to help. Absence of any expression, as always, speaks loudly to those of us who measure expectations of Texas elected leaders based on handling difficult issues that profoundly impact Texans with intellectual and developmental disabilties.
As a mother of a child who is profoundly impacted by autism I appeal to legislators to provide the funding necessary to support the delivery of peer reviewed research based practices in the education of our children. It is woefully short sighted to dismiss these intensive interventions based on cost. It is far less costly – in every sense of the word – to provide interventions that have been shown to enable individuals to progress in their independence and ability to contribute to society– than to support them throughout their life time. “Give a man a fish and you feed him for a day – Teach a man to fish and you feed him for a lifetime”. Most Special Education teachers are very hard working and dedicated to their students. Like the parents of Special Needs Children, I believe and hope there is a special place in Heaven for them. However, without specific training and appropriate staff to student ratios, they can not be successful in helping our children to progress. The fact that our children do not learn in the way that typical children learn does not mean that they can not learn. In the words of a man who dedicated his life to figuring out how to teach these seemingly unreachable children, “If a child cannot learn in the way we teach… we must teach in the way he can learn.” Ivar Lovaas The hard part has been done for us. Others have discovered what works in teaching autistic children. We need to ensure that the funding is in place to implement these methods. I cannot adequately express to you the feelings of anguish experienced by a mother who learns that there is something that can help her child only to realize that she must win the lottery or file a law suit in order to get it. It should not be so. What priorities could possibly be higher that ensuring that a human being have the opportunity to reach his or her full potential? As Benjamin Franklin said, ‘If you think education is expensive, try ignorance.’ I believe this is never truer that when applied to the population of autistic children.
By Anonymous on Action: Working to ensure quality teachers traine... on 3/30/11I am a parent of a special needs child. We have utilized and relied on many of the service that are to be cut. I tried working full time to support my family, but it was nearly impossible to do that. This was due to all the constant surgeries, doctor's appointments, home therapy, etc. for my special needs child. I cannot stress enough how vital programs like DARS, Medicaid, and special education is to my family as well as countless other families and individuals throughout Texas. Please, I urge all legislatures to reconsider the major financial cuts to these programs. Please, somehow, keep these programs available to the people that need them. No parent is prepared for raising a child with special needs. It's a growing process and programs like DARS, Medicaid are crucial to families succeed. So tomorrow, on April 1st, 2011, please vote for no cuts to these very important programs.
