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Parents of children with special needs: there IS something you can do

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A previous Austin Special Needs Kids Examiner report, Session is 'IN': What impact will it have for children with special needs? explained the impact of the Texas 82nd Legislative Session on critical services for special needs children and their families.

Quality of life and essential health care services for children with disabilities will be affected by the outcomes of this legislative session.

Services that provide medical care, life-altering therapies, respite help, and equipment for children with special needs will be cut as the State tries to balance an over $25 billion deficit. In short: Services that keep children out of nursing homes and thriving at home and in their communities will be cut with unforseen consequences for years to come.

A CALL TO ACTION.
While many set aside time to advocate by writing letters, testifying at hearings, and visiting legislators, not all parents have the time, or emotional energy, to participate in these efforts. There is something you can do!

Distributed by Lesa R. Walker, MD, MPH from the CSHCN (Children with Special Health Care Needs) Services Program:

"Calling all parents- please enter comments about the needs of your children and families in the Nightlight Report. It takes just a few minutes. Click on "Comments" at the bottom of the Legislator statements or at the bottom of one of the Report's pages... Share your voice with the Texas Legislature!

The Nightlight Report is a unique exchange between Texas Legislators and constituents focusing on the importance of services for children (and people of all ages) with disabilities and their families. The Texas Legislators opened a door for communication and the parents are responded with compelling and riveting testimony. The Nightlight Report is shared with all 181 Texas Legislators and their staff."

Get more support for your efforts by contacting one of these point people:

Linda Litzinger
Texas Parent to Parent Advocacy Network
linda.litzinger@txp2p.org

Dawn Choate
Governmental Affairs Specialist
The Arc of Texas
(512) 454-6694
TOLL FREE: 1-800-252-9729
dchoate@thearcoftexas.org

To find your State Representative and State Senator, the Who Represents Me? website provides an easy search by zip code.

Critical decisions will be made by the end of this month. The time to do something, anything, is now!

***A sample comment for the Nightlight Report (just tell your story!)***

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~

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