Tag: Legislation

Kevin and Avonte’s Law

The word eloping took on a whole new meaning when my three year old son began his new behavior of running away from me.  Due to the fact that I was already a “helicopter mom” even before my son’s autism diagnosis, my son did not have many opportunities to slyly wander away from me while we were out in public.  I faced the problem of having my son bolt from me with no (obvious) warning.

For many parents, elopement or wandering is a frightening problem that can occur with their children who are on the autism spectrum.  Parents may soon have resources and assistance to address elopement.  U. S. Senior Senator Chuck Shumer sponsored the new safety bill called Kevin and Avonte’s Law.  The U.S. Senate passed safety legislation on July 14, 2016. Currently in the U.S. House of Representatives, H. R. 4919 is assigned to a committee.

According to Autism Speaks, Kevin and Avonte’s Law would allow Justice Department grants to be used by law enforcement agencies and nonprofits for educational and other programs. The grants would facilitate training and emergency protocols for school personnel, supply first responders with additional information and resources, and make locating technology programs available for individuals who may wander from safety. See Autism Speaks   website for more information.

Changes to Texas Department of Aging and Disability Services

Texas Health and Human Services Commission

Many parents with children with special needs rely on the Texas Department of Aging and Disability Services (DADS) for Medicaid Wavier Programs and other supports and services.  A timeline of changes is provided below.

The Texas legislature approved and passed Senate Bill 200, making it law last summer, but what does that mean for DADS?  In the 1st phase, Texas Health and Human Services Center (HHSC) will have transferred to its control select function of the Department of Assistive and Rehabilitative Services (DARS), client services of the DADS and the Department of State Health Services (DSHS). and administrative services of the Texas Health and Human Services (HHS) system, set for September 1, 2016.

Further, DARS is scheduled to be abolished September 1, 2016.

The 2nd Phase includes the abolishment of DADS September 1, 2017.

For more information of the transformation of the Texas Health and Human Services Commission, click on the link below.

 http://www.hhsc.state.tx.us/hhs-transformation/docs/transition-plan.pdf

Radio spot – Info on Duchenne

Tomorrow morning at 8:00 on KPFT 90.1 Open Journal. Lindy Fillis (mom to Ditri age 5) and Erin Bullers (mom to Nicholas age 12) will be doing an interview from 8:25 to 8:55 explaining  Duchenne MD, upcoming Cure Duchenne Cares event taking place on Friday and Saturday, and  resources for families. They will also share with the audience on how they can help the Duchenne community with the critical adcom coming up on April 25th with the FDA. Although etepliresen only helps 13% of  Duchenne boys, it will pave the way for future drug approval.
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> You can urge your Senators to Sign a letter to the FDA. The link to do that is:
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Thank you U.S. Senate for the RAISE ACT

The RAISE ACT was introduced by U.S. Senator Susan Collins (R-ME) and Tammy Baldwin (D-WI) earlier this year. Now the legislation is on its way to the House.

“I applaud the Senate’s move to advance the bipartisan RAISE Family Caregivers Act forward, and I’m proud of the widespread support, nationally and in Wisconsin, that this critical, bipartisan bill has received,” said Senator Baldwin. “In so many instances, family caregivers put their own health, livelihoods and financial security at risk to tend to the needs of their loved ones, many of whom require full-time assistance and care. If we are serious about ensuring that our older adults and loved ones with disabilities receive the highest quality care in their own homes, we must formally recognize and support family caregivers. The bipartisan RAISE Family Caregivers Act creates a national strategy and plan to assist family caregivers. This effort is especially personal to me as I was raised by my maternal grandparents and later served as my grandmother’s primary caretaker as she grew older, and I will continue to work to ensure that everyone has access to the care and assistance they need and deserve.”

“Our family caregivers are an invaluable resource to our aging society,” said Senator Collins. “As our aging population continues to grow and the need for round-the-clock care for our seniors increases, uncompensated family caregivers will continue to be the most important source of support for people who need long-term care. At some point most of us will likely either be family caregivers or someone who needs one. The RAISE Family Caregivers Act will launch a coordinated, national strategic plan that will help us to leverage our resources, promote innovation and promising practices, and provide our nation’s family caregivers with much-needed recognition and support.”