Long-term services needs of people with intellectual disabilities

This message was given to me by a parent of an adult with Down syndrome. Please Read. If you feel moved to contact your representative please do:
http://www.house.state.tx.us/resources/faq.htm#who_rep

I am the mother of a 24 year old daughter with Down syndrome. I believe the Texas Legislature needs to be responsive to the long-term services needs of people with intellectual disabilities.

The 20+ bills and resolutions related to state schools clearly indicate the need for a PLAN FOR LONG-TERM SERVICES & SUPPORTS in Texas must be a priority.

Follow up:

Some of these bills want to keep the same system in place and only address institutional reform and safety issues. Other bills focus on directing agencies and stakeholders to take comprehensive look at the Long Term Services & Supports system, including current and future system needs.

There are over 85,000 Texans on waiting lists for Medicaid waiver and community services. There is NO waiting list for admission to state schools. This indicates families of 85,000 Texans want their family member with cognitive disabilities to live, work and play in their communities...not in state institutions.

Decisions made over the next 5 weeks for both the 2-year budget and directing the state agency are critical to the next 1 - 50 years of my daughter's life. We need you to understand and support legislative proposals that consider the current and future needs of all Texans with intellectual disabilities - not just persons residing in state schools. Texas needs a plan for Long Term Services & Supports in Texas.

Please support:
Senator Ogden's Rider 48
Senator Nelson's SB643
Senator Zaffirini's SB2407
Senator Ellis's SB1060
Representative Rose's HB1589
Senator Shapleigh's SB1407

My daughter volunteers in her community, works part time, has many friends and is a vital member of our family. We want her to have access to the supports she needs in the future to continue to live this way...especially after her father and I are no longer alive. While some people in Texas are outspokenly in favor of the "State Schools", we DO NOT want that for our family member. When decisions are made about distributing state funds, please recognize there is a huge need for supports in the community and most families shutter at the thought of State Schools as an option for the future of their family members.

Thank you for considering my concerns.

Categories: Educational Activism, Parental Concerns, Down Syndrome | Permalink | 3 feedbacks »

Comments:

Comment from: Kim Ashby [Visitor] · http://www.creativetutors.com/northcarolina/blog1.php

04/23/09 @ 22:43

States all across the USA are struggling with Medicaid waiver programs, long wait lists and appropriate ways to fund services for both children and adults with mential and physical disabilities. As a community, we need to encourage our legistators to research and gather family opinions on what would be best for our family members with special needs.

I am a NC resident and understand first hand the frustrations and the struggles a family faces as they try to balance government assistance and private insurance, when available, while helping the special needs family member stay in the least restrictive environment...one that allows them to live and participate with family, friends and the community at large.

Our legislators and others in the community need to learn to look past the labels and understand that these are people we love and who love us and others. They have as much a right as anyone else to live within the community, not locked away in an institution.

If you are not familiar with this Texas bill or familiar with the Medicaid waiver program in your state, I encourage you to investigate and learn more.

Comment from: Kathi [Visitor]

04/24/09 @ 06:41

It is hard to imagine that our legislators believe state institutions are the best option for people with congitive delays. Several other states have closed all their state schools and are serving this population in the community. Why? Because serving people in smaller community settings improves their quality of life and it's less expensive. A recent Department of Justice report cited numberous incidents of abuse and neglect in all the Texas State Schools. Yes...for those families who want state schools we need to consolidate facilities and ensure the safety and health of their family members but far more families want and need funding for their family member to continue to live with dignity in their own communities ... not state institutions.

Comment from: Minnie Blackwell [Visitor]

04/24/09 @ 08:30

I agree with the comments from the mom of a 24 year old daughter with Down syndrome. Earlier this year, the U. S. Dept. of Justice issued a report outling the abuse and neglect at Texas "State Schools." A long-range plan to consolidate and reform these institutions must be developed. As a taxpayer, I want funding for people with cognitive disabilities to be used efficiently and effectively. I'm calling my state senator and representative right now!

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