Don’t Let The 8.5% Cap on Special Ed Continue

In 2016, after the publication of a series of investigative articles by Brian M. Rosenthal in the Houston Chronicle, many parents with children in Texas public schools obtained confirmation of one of their worst fears – their children were missing out on education opportunities that could enrich their children’s lives. It may not sound like much to a parent with a typical child who can catch up on academics with a tutor, but for parents with children who require special education services and accommodations, catching up can feel impossible.

The U. S. Department of Education conducted their own investigation which concluded that Texas Education Agency (TEA) led schoold districts to delay or deny special education services to students by instituting an arbirtrary cap for enrollment of services at 8.5%.

Now, the TEA owes the public school children in Texas a proper education and the TEA is asking for your help. We have until April 18th to offer comments on the draft of the the strategic plan to get our schools in line with rest of the country with regards to special education.

Click on the link below to read more information on the draft and to offer your comments.

https://tea.texas.gov/About_TEA/News_and_Multimedia/Press_Releases/2018/TEA_accepting_comments_on_draft_strategic_plan_for_special_education_through_April_18/

Tired of Being Denied Government Services – Sign Your Child Up For Medicaid Waiver Programs

Texas Department of Aging and Disabilities (“DADS”) was the agency that, for many years, parents with children with disabilities reached out to for government assistance of support and services. Texas programs were administered by DADS until its abolition on September 1, 2017.

The Texas Health and Human Services Commission (“HHS”) is now charged with protecting vulnerable Texans. HHS administers programs formally serviced by DADS, including:

Community Living Assistance and Support Services (“CLASS“)

Deaf Blind with Multiple Disabilities (“DBMD“)

Home and Community-based Services (“HCS“)

Medically Dependent Children’s Program (“MDCP“)

A common complaint I hear from parents who are in search of help from the government is that their family fails to qualify for support due to household income.  Although income is not necessarily a factor for eligibility for benefits from these Medicaid Waiver programs, waiting on an interest list for can take years.

 

As of July 31, 2017, tens of thousand of Texans are on interest lists. HCS has 86,989 people on its interest list, CLASS has 61,926 people on its interest list, and MDPC has 18,867 people on its interest lists.  Parents should contact HHS and their local benefits provider, such as the Harris Center, to begin the application process.

https://hhs.texas.gov/about-hhs/records-statistics/interest-list-reduction

More Children in Need, Less Resources?

Although the Center for Disease Control issued their assessment in 2014 that 1 in 68 school-aged children are on the Autism spectrum, federal funding for the care of these Americans is in jeopardy. A person diagnosed with Autism Spectrum Disorder, or diagnosed with any of the many other related conditions may qualify to receive disability-related Medicaid benefits.

Analysis from Avalere predicts that Medicaid, which provides supports and services to  disabled children and adults, could see a reduction funding of up to $215 billion should the Graham-Cassidy bill be passed.

Three Republican senators and all Democratic senators vowed to vote against the latest attempt to repeal and replace the ACA, stalling the vote. The effort to change healthcare laws is not over. Parents and advocates of children and adults with special needs must get educated and involved in the healthcare debate. The Affordable Care Act has many problems that need to be addressed, but if you or a loved one is the recipient of Medicaid benefits, speak out to block a disaster and offer a solution.

Where Are Our Special Education Teachers?

I recently visited a popular job posting site and conducted a search for Special Education Teacher jobs in Houston, Texas. The results were amazing – 221 jobs in Houston waiting to be filled.  Why so many? Has the general population not realized the growing need for qualified people to care for our children?  Are our SpEd teachers burnt out from the extreme demands placed on them and have moved on? As I prepare to send my son back to school next week, I am relieved to know that his SpEd teacher is still at our school, but what about other schools in Texas?

In December 2015, the No Child Left Behind Act (2002) was replaced with the Every Student Succeeds Act (“ESSA”) with goals set to ensure students not only graduate from high school, but also attend college.  In order for this federal Act to succeed, states are encouraged to be innovative accountable for results.  According to their website, the Texas Education Agency (“TEA”) will attempt to fully implement ESSA by focusing on four goals: (i) improving our low-performing schools; (ii) tying high school success to a future with college and a career; (iii) getting back to basic reading and math; and most importantly (iv) “recruiting, supporting and retaining teachers and principals.”

As a parent of a child with special needs, your voice should be heard during this planning process.  Provide feedback on the key policy decisions concerning your child’s education. We need keep our SpEd teachers from leaving their professions by paying these teachers proper compensation for all that they do every day with our kids. We need to attract additional skilled professionals and paraprofessionals.

ACT NOW – The Texas Education Agency is now accepting comments on the ESSA State Plan until August 29th.

Thank You to Dads!

Thank You to Dads!

                We at the Filis Law Firm want to thank all of the fathers who contribute daily to the betterment of our children’s lives. Our families who have children with special needs are members of a unique group that I am proud to be a member of. This discussion is directed to you.

I was recently confronted with a statement from a client that the mothers in our unique group do all the work associated with caring for our kids with special needs. I found that statement quite exaggerated based on my own observations of many families with a child or children who have a disability, but I felt obligated to explore this generalized statement and tease out some truths.  In our society, traditionally, mothers are designated from day one as the instant child care expert. In homes with a child who is disabled, in my experience, out of the two-parent families, it is typically the mother who go to all the doctor visits and read hundreds of books/articles/blogs on their child’s condition and possible treatments, but these circumstances follow what is still the standard practice in most American homes.

Recent studies indicate that even if the mother is employed outside the house, she is still likely to take most of the household chores and child care.  An article from CNBC in April 2015[1] revealed the results from a survey by the Working Mother Research Institute where 79% of working mothers are primarily responsible for laundry, cooking, and child care. But, believe me, we want our kids’ dads in our unique community to join in the child care and be on an equal footing.  If parents are not equal participants in child care, then look at the circumstances in your household and see if there is a gatekeeper[2] who is (possibly unknowingly) keeping others at bay away from the child.

The common example of a gatekeeper parent is typically the mother in the relationship.  Scenarios display that the mother is reluctant to hand over child care responsibilities or becomes critical the father’s efforts. Studies show that the father will learn to participate in child care less, and if the father does participate, he views it as baby-sitting and doing the mother a favor. The studies I read are based in settings of households of typical families, whose households do not include a disabled or medically fragile child. In our unique group, we have  children who can truly suffer harm from certain environmental factors/allergens, or can suffer health problems for failure to take medication timely. These health risks are circumstances that are additional to other typical child-rearing issues, all of which can elevate a caregiver’s protective instincts to become reactionary and often blunt. It has been my observation that all of the caregiver parent’s patience is spent on the child.  Multiple interactions with the gatekeeper/caregiver parent can be unbearable for an “outsider” and result in pushing away some people, even family members, from the child. Gatekeeper parents can change the circumstances, welcome the other parent to join in and take over certain areas of the child’s life. Gatekeepers will need to completely remove themselves, offer no criticism, and allow the other parent or family member to participate in events with the child, even if the efforts made are far from perfection.

Give others a chance to join in and add value to your child’s daily life.

[1] CNBC, Working moms still take on bulk of household chores, Kelley Holland, April 28, 2015.

[2] Mothers’ Gatekeeping of Father Involvement in Married- and Cohabitating-Couple Families, Catherine Kenney and Ryan Bogle, paa2009.princetonedu/papers/91717.

Estate Planning Seminar March 11th

Good morning! We are getting ready for our joint presentation with Blake Douglas.

Estate Planning – whether you are a college student or grandparent, there are legal documents to assist you and your loved ones in stressful times of need.

Thank you Barbara Pardue for the fabulous Facebook event design.

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https://www.facebook.com/events/794520557363555/

 

See you at the office building 5600 NW Central Drive – large conference room on the 1st floor at 2 pm.

 

The FDA Should Listen to the Voice of the Patient – Perspective on benefits of use of Eteplirsen

Dominic Romito watched during testimony about Sarepta’s clinical trial of an experimental drug to treat Duchenne muscular dystrophy.Photo from The Boston Globe 4/25/2016

Families with children with Duchenne muscular dystrophy (“DMD”) from all over the United States flew to Maryland to attend a Food and Drug Administration (“FDA”) advisory committee meeting on a mission to convince committee members to recommend accelerated approval of a new drug application for eteplirsen.  Scientists argued that the clinical trials provided evidence that the drug slowed the progression of DMD.  Parents received time-limited slots to discuss their own observations of the positive effects of the drug.

The accelerated approval provisions in Section 506(c) of FD&A Act, added by Section 112 of the Food and Drug Administration Modernization Act of 1997, allows for accelerated approval to “a product for a serious or life-threatening disease or condition . . . upon a determination that the product has an effect on a surrogate endpoint that is reasonable likely to predict clinical benefit, or on a clinic endpoint that can by measured earlier than irreversible morbidity or mortality, that is reasonably likely to predict an effect on irreversible morbidity or mortality or other clinical benefit, taking into account the severity, rarity, or prevalence of the condition and the availability or lack of alternative treatments.”

The advisory committee was asked if the applicant provided substantial evidence from adequate and well-controlled studies that Eteplirsen induces production of dystrophin to a level that is reasonably likely to predict clinical benefit.  The phrasing of the question is not applicable where the study participation is small due to the rarity of the disease, such as DMD.  Surrogate endpoints and intermediate clinical endpoints should be considered in situations for clinical studies for drugs for rare diseases.

Unfortunately, after hours of testimony, the committee recommended against approval for Sarepta’s exon-skipping drug eteplirsen.

The FDA is allowed to expedite programs for serious conditions in Section 506(b) of the FD&C Act as added by Section 112 of the Food and Drug Administration Modernization Act of 1997 and amended by Section 901 of the Food and Drug Administration Safety and Innovation Act of 2012 (FDASIA).   Receiving and acknowledging the testimony of patients is part of the drug review process under the Patient Focused Drug Developments initiative launched by FDASIA.

By utilizing the flexibility offered under FDASIA, the FDA can fast-track the approval process for Eteplirsen.

Every minute matters to families with boys who have the rare disease.  The final FDA decision is with the director of the drug evaluation center, Janet Woodcock.

Debra Miler, co-founder and CEO of CureDuchenne, a nonprofit organization, offers her words of encouragement for approval at www.cureduchenne.org.  The advancement of treatment for a child with DMD affects the quality of life.

Senator Rubio brought attention to this matter – click here for the video SenatorMarcoRubio.

 

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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Duchenne Muscular Dystrophy

Please think about visiting this website today and get great information about Duchenne Muscular Dystrophy and how you can help.
http://cureduchenne.com/blog/giving-our-sons-with-duchenne-the-best-care-possible/

The video starting with Emily and Will about clinical trials and research had a huge impact on me and I hope you take the time to watch it at http://www.cureduchenne.org/about-cureduchenne.html

 

Cure Duchenne Cares Workshop April 9th

duchenne-cares-head

April 9th at 1:15 pm, Leona E. Filis will be speaking about legal issues, including Special Needs Trusts, Wills, and Medicaid Waiver Programs – specifically C.L.A.S.S.

For more DMD Workshop information, go to cureduchennecares.org

CureDuchenneCares_Caregiver_Flyer_Houston