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.

Temporary Extension of Medicaid for Certain IDD Waiver Program Recipients

Parents of Children with Special Needs –

Once your child with special needs comes off a Medicaid Waiver Program list, or becomes eligible for SSI on his or her own, it is of great importance to keep your child’s eligibility for benefits. If SSI is denied or lost, so is Medicaid.

Under certain circumstances, a SSI and Medicaid recipient who loses such benefits may be allowed to temporarily continue to be Medicaid eligible.

To review eligibility terms, click

HHC Texas Information Letter

and

https://www.yourtexasbenefits.com/Learn/Home

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.

 

It is IEP Season

Getting prepared for your next ARD meeting can be challenging.

Here are some Frequently Asked Questions pertaining to IEPs and ARDs that I have received the last couple of weeks.

Can parents request information of teachers’ and paraprofessionals’ qualifications?

Changes per the TEA beginning with the 2016-2017 school year –  the schools and teachers only need to meet the state requirements for certification.  Paraprofessionals must still meet the highly qualified requirements under No Child Left Behind for the 2016-2017 school year.

Once at the ARD meeting, can I postpone?

You can request more time or disagree and ask to recess and reconvene within ten school days. Review and if you agree, sign the IEP by the deadline. You can ask for a Facilitated IEP. If both parents and school agree, a trained person assists in getting people to reach an agreement. If the ARD committee cannot reach a mutual agreement, parents are allowed to write your own statement of disagreement.

What if I do not agree to the content of the Evaluation or Reevaluation Report?

Request the evaluation report in advance of the ARD.  Request clarification if the evaluation report is vague. If parents do not agree with the results of the school’s evaluation or reevaluation, parents may request an Independent Educational Evaluation (IEE).  The school has the option of (1) paying for the IEE or (2) requesting a due process hearing to prove the appropriateness of the evaluation.

How do we request a paraprofessional?

Structure your request for a dedicated paraprofessional by answering Who, When and Why for your child’s needs.

Who –  Paraprofessionals in Texas public schools this school year must meet the federal definition. Do not allow “aide” to be used as a substitute for the “paraprofessional” in the IEP.  When – Throughout the entire school day, specific classes or times of day, or only transitions. Why – Behavior management, activities of daily living, social skills, instructional support.

 

Feel free to send me more Special Education questions at leona@filislaw.com.

 

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