September 2014

September 09, 2014

September, 2014: Download a Printable Version here.

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Feature Story: Families Together: Taking on Goliath

Public Policy Update: Medicaid Coverage Of Autism Treatment Services

Family Leadership in the States:Advancing Culturally and Linguistically Appropriate Family-Professional Partnerships

From Our Partners:

News You Can Use

What's New with Family Voices:

Families Together: Taking on Goliath

Fighting off the giant Bureaucracy Jay and Laura Kulsrud have made many visits to the Food and Drug Administration (FDA) to obtain approval to for their sons to receive a new experimental drug (RE-024, manufactured in the U.S.) which has shown promise in Europe. The Kulsrud’s doctor applied for an IND or investigative new drug application to treat the boys. Over the course of many months, they battled a maze of bureaucracy, misinformation, conflicting guidelines, referrals to the wrong program staff, long delays in receiving answers, lack of priority for PKAN (an orphan disease)—experiences that many of us know all too well. The FDA denied the Kulsruds a chance to treat their sons with this new drug that could save their lives.

The drug’s manufacturer, Retrophin, received a patent for RE-024 and Martin Shkreli, co-inventor of the drug, has stated “we have been testing it vigorously," and “it has ultimately been proven to be effective." Referring to the Kulsruds, he continues, “the FDA must make exceptions. The rules need to change when lives are at stake," he said. "There is no greater risk - they are on borrowed time."1

An August 22 article in Bloomberg Businessweek2 questions how the process for using an experimental drug to treat two adults with Ebola is different from what the Kulsrud’s are seeking. “That some Ebola patients are getting access to preclinical therapies, possibly because of public pressure created by the global media spotlight on Ebola, is more frustrating yet. There may be valid reasons for allowing Ebola patients access to untested drugs, and equally valid reasons for regulators to tell PKAN patients they must wait for further safety research to be done. But untold numbers of people like Kulsrud’s kids are outside the spotlight, waiting and hoping for better answers than they have now.”

Help the Kulsruds help their sons. Please sign the Kulsrud’s petition by 9/12/2014 to urge the Food and Drug Administration to use the Accelerated Approval pathway for approval and access to the drug RE-024 for treatment of PKAN.

1 The Bismark Tribune, May 3, 2014, “A Fight Against Time”
2 Bloomberg Businessweek, August 22, 2014, “The Difficult Questions Raised When Some Patients Get Untested Drugs”

Public Policy Update


Legislative Corner


Public Policy Update: Medicaid Coverage Of Autism Treatment Services
by Janis Guerney, Brooke Lehmann, and Lynda Honberg

On July 7, 2014, the Center for Medicaid and CHIP Services (CMSC) issued an Informational Bulletin titled “Clarification of Medicaid Coverage of Services to Children with Autism.". It is estimated that about one-third of children with autism spectrum disorder (ASD) are covered by Medicaid or CHIP and CMSC was responding to increased questions regarding services for these children.

Non-licensed practitioners. Significantly, the Bulletin also clarifies that Medicaid may pay for the services of practitioners who are not state-licensed, as long as they are under the supervision of licensed providers and certain other conditions are met. Many individuals who provide ABA therapy are not licensed under state laws. In most cases, states will have to submit Medicaid State Plan Amendments to provide such coverage.

Impact on those receiving waiver services. It is important to note that the July Bulletin may result in some children with ASD losing eligibility for services they now receive under a “waiver” program, since state waivers will no longer be available for the ASD services that are now required pursuant to the Bulletin (see page 5). Those who may be affected are primarily children whose family incomes are too high to qualify for Medicaid without a waiver. Eligibility can be maintained if some of the services received would not be covered under EPSDT. Such services might include respite care or other non-medical services. The Bulletin also states that “Individuals age 21 and older may continue to receive services to address ASD through the waiver if a state does not elect to provide these services to adults under its Medicaid state plan.”

State advocacy needed. States will have to figure out how to ensure required coverage of services for children with ASD, providing a good opportunity for family leaders to get involved in the process. In fact, CMS is encouraging Medicaid Directors to reach out and involve providers, families and advocates as the states review their options and consider any changes that will impact children currently receiving autism services through waivers.


Contact Brooke Lehmann ( or Janis Guerney ( if you have any questions.


Family Leadership in the States


Family Leadership in the States

Family and professional leaders across the nation have hands-on experiences in observing and helping to address the healthcare disparities of families of diverse backgrounds with children/youth with special health care needs. In a new initiative, Family Voices National Center for Family/Professional Partnerships (NCFPP) has solicited applications from organizations that demonstrate culturally and linguistically effective practices in developing and sustaining family-professional partnerships with diverse families. The NCFPP has vetted these applications and selected those practices deemed to be exemplary. The NCFPP will work with the selected organizations to identify essential elements, steps to success, lessons learned, and their impact, and compile this information into a white paper for potential replication by other family leaders. The organizations selected this year with examples of their exemplary practices are:

We congratulate the above organizations and look forwarding to sharing more information about their exemplary practices.

From Our National Partners


Families USA: Health Reform & Disparities
A new blog addresses health reform and health disparities. Infographics (great for sharing) are featured that show disparities most impacting Latino, Asian and Pacific Islander, African American and American Indian/Alaska Native populations.

AMCHP PULSE Newsletter: Adolescent/Young Adult Health and Youth Involvement
This newsletter issue provides 20 pages of information, stories, statistics, and news about and for youth. Articles include Young Adult Health Issues, Update from the Office of Adolescent Health, Strategies to Address Bullying.

AMCHP Nominations Sought for Award
AMCHP recognizes leadership in maternal and child health in several ways, including awards presented to MCH leaders to honor their excellence in the field. These awards will be presented at the 2015 AMCHP Annual Conference, Jan. 24-27 in Washington, DC. The nomination deadline for these awards is Sept. 19, 2014.

NICHQ New Website
NICHQ's new name, National Institute for Children’s Health Quality, and website reflect their increased scale and expanded focus beyond the clinical setting to the broader influences that produce children’s health.

News  You Can Use

News You Can Use

XXYY Project
XXYY Project Does your child or adult have XXYY Syndrome?The XXYY Project, an international organization serving families and/or caregivers of boys and men diagnosed with 48, XXYY syndrome, is seeking to find and have contact with XXYY families. If your child, adult, sibling or person you care for is diagnosed with XXYY and you do not already know the XXYY Project, please contact us. Some males diagnosed with XXYY were told that their diagnosis was “a variant of Klinefelter Syndrome*” (which is actually 47, XXY) and may not be aware that XXYY is not the same as Klinefelter Syndrome. Please check your medical records for your exact diagnosis if this rings a bell.

Getting the Most out of Vocational Rehabilitation Getting
This publication explains the types of services vocational rehabilitation (VR) provides and the process of applying for services, and offers tips and a case study that illustrate how to obtain successful outcomes from VR.

Early Childhood Experiences Shape Health and Well-Being Throughout Life
This 16-page issue brief from the Robert Wood Johnson Foundation explains in detail how economic and social conditions can directly influence child development, shaping their health throughout their lives. It also considers what can be done to help vulnerable children, based on the evidence of interventions that have been shown to work.

What's New with Family Voices

Polly Arango Mentoring Initiative

Family Voices announces the recipients of a new funding and leadership opportunity for families of cultural and linguistic diversity with children and youth with special health care needs. The recipients are the first awardees through the Polly Arango Mentoring Initiative, a program that seeks to support Family Voices State Affiliate Organizations in preparing families from diverse cultural and linguistic backgrounds to join a new generation of family leaders that reflects the growing diverse populations within states and our nation, while building the leadership and advocacy of Family Voices State Affiliate Organizations at the state level. POLLY ARANGO MENTORING INITIATIVE RECIPIENTS:

  • Alaska Stone Soup Group (Focus: Native Alaskan families),
  • Iowa Family Voices at ASK Resource Center (Spanish-speaking families),
  • Family Voices of Minnesota (Focus: Somali families), and
  • North Carolina Exceptional Children’s Assistance Center (Focus: Spanish-speaking families).

Mercedes Rosa of Statewide Parent Advocacy Network of New Jersey (SPAN) was selected as a mentor to Iowa and North Carolina.

“Polly’s vision for a nationwide, empowered and vocal voice of families includes the voices of families from diverse cultural and linguistic backgrounds,’’ according to Family Voices National President Molly Cole. “To establish a lasting memorial to Polly, Family Voices will use funds from the Polly Arango Memorial Fund to establish a mentoring program to support the growth of the Family Voices organization through the development and support of emerging family leaders from culturally and linguistically diverse backgrounds. We congratulate the selected four states and look forward to their new leaders. ”

Family Voices Comments on Proposed Revisions to Title V Block Grant

In response to a request for public comments from the Maternal and Child Health Bureau (MCHB) on a major revision of the Title V MCH Services Block Grant to States Program, Family Voices submitted comments with input from our network of Family-to-Family Health Information Centers and Family Voices State Affiliate Organizations. The comments, endorsed by 53 family-led organizations represent the voices of experienced and diverse family leaders actively engaged with State Title V programs in every state and the District of Columbia. Submitted comments focused on family and consumer engagement, measuring care for CYSHCN, proposed information collection regarding MCHB’s function, and enhancing the quality, utility and

  • does not specifically indicate the critical role that families play as partners to Title V;
  • does not require the Title V programs to report how they worked with family-led organizations to plan the needs, accomplishments, priorities, action plans and performance measures for the block grant;
  • does not require states to report how they arrived at their self-ranking of commitment to engage family/consumer partners;
  • does not require states to collect information from the families they serve about the value of the services, or from the family-led organizations which contribute to their report;
  • requires that states report on too few performance measures around CYSHCN (only one).
  • For more information on the comments submitted please contact Nora Wells.

    Join One-in-Five Campaign

    More than one in five families has at least one child with special health care needs! Join the Family Voices National Membership & Public Awareness Campaign & Make a Difference! Membership costs range from $15 (students) to organizational memberships based on budget size. Memberships for youth with disabilities under age 24 are free. Get the Word Out! Order and wear buttons at public events, information fairs, membership meetings, trainings and in your community. Tell others about the One in Five families.

    Family Voices Email Blasts

    Subscribe to Family Voices Email BlastSign up for short, timely email blasts on the latest news on events and resources important to families of CYSHCN.


    Family-Centered Care Assessment (FCCA)

    Family Voices is collaborating with the American Academy of Pediatrics in a Family-Centered Care Pilot Project. Participating pediatricians will administer the FCCA to 25 families in their practices, and receive training in family-centered care from family leaders partnering with healthcare providers. The project will evaluate the benefits of the FCCA as a tool for improving the quality of family-centered care. Learn more on the National Center for Family/Proessional Partnership website.


    ABCs of Quality Improvement

    Family Voices NCFPP and NICHQ are jointly sponsoring a 5-session webinar course on Quality Improvement. Applications will be available in October. Teams of 2-6 members with at least one parent partner and one professional partner engaged in an improvement project in their state or community may apply. Key topics include: Model for Improvement, What Makes a Good Aim Statement, Measurement, Plan-Do-Study-Act (PDSA) Cycle, Key Collaborative Documents. For more information contact Bev Baker.


    September is National Preparedness Month and CDC’s Office of Public Health Preparedness and Response (OPHPR) has chosen to focus on vulnerable populations this year:

    • Children - Incorporating children into emergency preparedness and what to do with kids during an emergency, including the importance of post-disaster concerns for kids
    • Special Medical Needs - Developing preparedness actions for those with disabilities, health conditions, medical needs, their caregivers, and information for emergency planners
    • Older Adults - Identifying the needs and limitations of older adults and the importance of keeping specialized items ready in case they are needed during an emergency or natural disaster
    • Pet Preparedness for Pet Owners - Building an animal emergency supply kit, identifying pet-friendly shelters and evacuation spots, and making plans in case you are separated from your pet
    CDC Chat on Preparedness

     Thank you for your interest in Friday's Child.  To subscribe to the e-newsletter version, please visit Should you have any questions about this newsletter, please email Peggy Curran