This newsletter was sent July 26, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

NEWS

Parents, Professionals, And Family Voices Provide Testimony At Advancing Care For Exceptional Kids Act Hearing

The House Energy And Commerce Subcommittee On Health conducted a hearing on July 7 to address a revised discussion draft of the Advancing Care For Exceptional Kids Act (ACE Kids Act, H.R. 546). The ACE Kids Act is a proposal aimed at improving care coordination and quality of care for children with complex medical needs. If enacted, the bill would allow Medicaid programs to establish health homes for medically complex children while providing enhanced payments to help with implementation. Cosponsored by Representatives Joe Barton (R-TX) and Kathy Castor (D-FL), the ACE Kids Act has 214 bipartisan cosponsors in the House and 38 in the Senate. At the hearing, health care professionals and parents shared their stories and provided testimony on the importance of passing the ACE Kids Act. Maria Isabel Frangenberg represented Family Voices, and a brief summary of her testimony can be found here along with a comprehensive witness statement. To listen to a recording of the hearing and read more snippets of parent and professional testimony, click here .*Above image courtesy of Children’s Hospital Association.

Make-A-Wish Grants Hayward Child An Accessible Playground: Where The Heart Of The Bay Comes To Play

Thanks to Family Voices Of California Project Leadership graduates Emelyn Lacayo and Daniel Vasquez, children with special needs who live near Hayward will now have an accessible playground to explore with their peers. Inspired by their daughter, Mia’s, love of the outdoors, Emelyn and Daniel proposed the idea of an accessible play area to Make-A-Wish since they were driving miles just to access a structure Mia could interact with using her wheelchair. The Hayward Area Recreation District voted to change the name of an existing playground, Ruus Park, to Mia’s Dream Come True: Where The Heart Of The Bay Comes To Play, and make accessible changes. Planned modifications include incorporating softer materials, building accessible swings and roundabouts, and improving the walkways. For more information, click here.

Upcoming Kid’s Rural Health Conference In Redding, Transition Fair In Sacramento

On Friday, Rowell Family Empowerment Center in Redding is hosting a free Kid’s Rural Health Conference. Topics will include the California Children’s Services redesign, telehealth, Denti-Cal, and accessing services for mental and behavioral health conditions. Representatives and providers from local health plans will speak on these topics. To register, click here.

On Sept. 21, Warm Line Family Resource Center in Sacramento will host a free Transition Resource Fair where young adults and their families can learn about available options during the move from pediatric to adult care. Information on day programs, employment and college, and self-advocacy will be available. To register, click here.

Reminder: Don’t Miss Tomorrow’s Webinar, “Family Protections And Continuity Of Care In The New CCS “Whole-Child Model”

There’s still time to register! If you’re a parent or provider who lives in one of the 21 counties where children will be moved from California Children’s Services to Medi-Cal managed care beginning July 2017, this webinar is for you. Presenters from the Western Center On Law & Poverty and Disability Rights California will discuss how to keep your child’s current providers during this transition, your continuity of care rights, and your protections. They’ll also cover what to do if you have grievances, how to get a second opinion, and how to appeal decisions. To register, click here.

RESOURCES

Webinar Recording: Introducing The Senate Select Committee On Children With Special Needs

This webinar provides an overview of the Senate Select Committee on Children with Special Needs, chaired by California State Senator Dr. Richard Pan. Chief Committee Consultant Cristina Jade Peña summarizes objectives, recaps key takeaways from the first hearing held Dec. 1, 2015 (read a report from this hearing), and outlines the role of family advocates. To watch an introduction video on the Committee, click here, and to watch the webinar click here.

New Fragile X Syndrome Resources From The American Academy Of Pediatrics

The American Academy Of Pediatrics has developed educational materials for pediatricians and parents that address some of the myths and facts about Fragile X Syndrome (FXS). The handout for providers includes tips about obtaining a family history and when to seek a genetic evaluation, and the parent handout addresses what parents can do if FXS is suspected or recently diagnosed.

Catalyst Center: Early/Periodic Screening, Diagnostic, And Treatment (EPSDT) Section

The Catalyst Center has a wealth of information on their Public Insurance Programs And Children With Special Health Care Needs: A Tutorial On The Basics Of Medicaid And The Children’s Health Insurance Program section. They’ve recently expanded this tutorial to include a section on EPSDT that provides information on covered services, youth in transition, youth in foster care, managed care, Title V, and autism. To read the new section, click here.

WEBINARS

July 27: Building Community Alliances Based On Trust: Two Member Experiences

Sponsor: Children’s Hospital Association

More information and registration here.

July 27: Recommendations For Nonopioid Treatments In The Management Of Chronic Pain

Sponsor: Centers For Disease Control And Prevention

More information and registration here. 

July 27: Eliminating Barriers To Innovative Medications

Sponsor: Mended Hearts

More information and registration here. 

July 27: Building Effective Partnerships Between Pediatrics And Public Health: Lessons Learned From The Practical Playbook

Sponsor: American Academy Of Pediatrics

More information and registration here. 

July 27: Harnessing The Power Of Data To Support Kids Walking And Biking

Sponsor: Safe Routes To School National Partnership

More information and registration here. 

July 27: Learning From Patient Experience: Where We Have Been, Where We Can Go

Sponsor: Patient-Centered Primary Care Collaborative

More information and registration here.

July 28: Implementing The Workforce Innovation And Opportunity Act From A Disability Perspective

Sponsor: LEAD Center

More information and registration here. 

July 29: The Road To Recovery: Supporting Children With Disabilities Who Have Experienced Trauma

Sponsor: Association Of University Centers On Disabilities

More information and registration here.

August 1: Health Care And Social Service Provider Partnerships For Complex Patients

Sponsor: The Commonwealth Fund

More information and registration here. 

August 2: Patient Navigation: Care Coordination Meets Peer Support

Sponsor: Genetic Alliance

More information and registration here. 

August 2: Classroom Management Supports For Attention Deficit Hyperactivity Disorder Behaviors In Early Childhood Education Settings

Sponsor: National Resource Center On ADHD

More information and registration here.

ARTICLES

“Meet Susan Tom, The Super Mom Of 11 Children With Special Needs“

“A New Family: Rescue Couple Adopts Four Siblings With Disabilities“

“As Undocumented Children Enroll In Medi-Cal, Some Clinics See Uptick In Patients“

“Miracle Manor Helps Parents Focus Finances On Their Children’s Health“

“Despite Federal Directive, Some With Autism Still Denied Applied Behavior Analysis“

“Autism Wandering Bill Gains Senate Approval“

“Helping A Child Manage A Chronic Illness“

“In First, Insurer To Offer Applied Behavior Analysis Coverage Nationwide” 

“California Mental Health Organizations To Receive $13 Million Boost“

“How To Help Kids Cope With Violence In The Media“

“A Cast With Down Syndrome Brings Fresh Reality To Reality TV“

“Fashion’s Newest Frontier: The Disabled And The Displaced“

“Pokemon Go Is A Game Changer For Son With Autism, Mom Says“

“Young Adults Can Face A Challenging Path To Health Insurance“

“A Cavity-Fighting Liquid Lets Kids Avoid Dentists’ Drills“

“Georgia’s System For Segregating Children With Disabilities Resists Calls To Reform“

This newsletter was sent July 12, 2016. If you’d like to receive our next bi-weekly digest full of a curated collection of resources, workshops, policy highlights, and action items that affect children and youth with special health care needs, please sign up here.

Born with spina bifida, hydrocephalus, bladder and bowel dysfunction, and clubbed feet, 21-year-old Derek Longwell has had 43 surgeries in his lifetime. His care map spans a vast network of specialists and services that he relies on for treatment, medical equipment, and support. 

Before Derek turned 21, he was worried he wouldn’t have access to the services he needed—this age marks a pivotal period for youth with disabilities as they must transition away from pediatric-centered care and towards a different set of adult providers. For many, this period also includes learning how to advocate for one’s own health care and practicing skills that pave the way for lifelong independence.

Derek was willing to share with us how he and his mom, Wendy, worked together to ensure he was prepared for this change.

How did the transition from pediatric care to adult providers impact your overall experience?

My mom and I worked with California Children’s Services (CCS) and got referrals to Stanford so that we could meet my adult providers ahead of time. I really like my Stanford doctors and I am happy that CCS helped me meet them before I had to switch!

What could be done to improve the transition process?

It’s important to make sure there’s a network of support for those who don’t have someone at home to help them. Transition was a very stressful time for me because of all of the paperwork that came in the mail for me to fill out. Without my mom, I wouldn’t have been able to complete everything.

*Wendy notes that for a more streamlined transition, she believes medical records should be shared with the child’s new plan at least six months in advance, not 90 days. She ran into a waterfall of issues while attempting to get an initial appointment with Derek’s managed care plan, and they didn’t actually receive his records until after he turned 21:  

I got a letter from our new managed care plan stating Derek would be transitioning in two months and that I needed to pick a new primary care physician. I called and emailed asking to set up an appointment. I waited a month and then emailed the people I knew who were higher up in the chain of command. I was then given an appointment four days before Derek’s 21st birthday. When he and I showed up, they told me they sent an email that morning cancelling the appointment. I then gave our managed care plan copies of Derek’s conservatorship paperwork and a list of his doctors since they’d received nothing from the state. I followed up with a couple other calls and several emails before everything was finalized. Now, we’ve been assigned a case worker who lives in Eureka (a 3-4 hour drive vs. a 30 minute drive to get to our CCS office). All of this should have been done before Derek turned 21. He had his 43rd surgery in April—what if he needed an operation directly after his birthday? They wouldn’t have been ready!

During this critical period, family engagement is crucial. How did having the support of your mom, and others, ease transition?

My mom took care of most of the transition issues like medications, supplies, and doctors. CCS made sure I had all new equipment (wheelchair, braces) and that our new house was set up for me with a grab bar, shower bench, etc.

What are some things you do to manage your own care? 

It’s really hard for me to talk to people I don’t know (especially over the phone) unless I have practiced what I am going to say. So far I have taken over calling to get my wheelchair and braces repaired. As far as doctors are concerned, when I have an appointment I talk to my doctor and my mom fills in the spots when I forget something important. We make a good team!

As far as a career or occupation, what are some of your down-the-line goals?

College was very difficult for me with all of my health issues and my learning disabilities. My papa has a wood workshop and I really enjoyed working in it with him when we visited him in Idaho. My mom helped me set up my own shop and I have been learning how to make things. So far I have made gifts for friends and family. I also refinished an aquarium stand and top as my first paid job. My ultimate goal is to open my own store to sell my stuff in.

What advice would you offer to others who are going through transition right now? 

Don’t give up when it gets tough. There are people out there who will help you at places like Rowell Family Empowerment, where my mom works.

Related: check out the Hydrocephalus Association’s Transition Guide For Teens And Young Adults.

NEWS

July 27 Webinar: Family Protections And Continuity Of Care In The New “Whole-Child Model”

This webinar is intended for parents who live in one of the 21 counties where kids in California Children’s Services will be moved to Medi-Cal managed care beginning next year. Presenters from the Western Center On Law And Poverty and Disability Rights California will discuss how to keep your child’s current providers during this transition, your continuity of care rights, and your protections. They’ll also cover what to do if you have grievances, how to get a second opinion, and how to appeal decisions. To sign up for the webinar, click here.

Assembly Committee On Health Passes California Children’s Services Bill, SB 586

On June 28, the Assembly Committee On Health voted unanimously to pass an amended version of SB 586, a bill intended to streamline care for some medically complex children by moving them from CCS to Medi-Cal managed care programs. The Department Of Health Care Services also released a feedback sheet in response to advocate’s suggested amendments. The bill will now move to the Assembly Appropriations Committee. To read more, click here, and to listen to a recording of the June 28 hearing, click here.

RESOURCES

Recordings From Co-Occurring Developmental Disabilities And Mental Health Issues In Transition Aged Youth Conference

Session recordings and corresponding slides from the Children’s Hospital Los Angeles and University Of Southern California’s Community Education Conference are now available. There are over 15 presentations that cover transition-related topics such as making and keeping friends in young adulthood, excessive restraint and seclusion in schools, competitive  integrated employment, and the impact of health and fitness in the special needs community. To view the presentations, click here.

Hand In Hand: Summer Newsletter From The Down Syndrome Research Foundation

The summer edition of Hand In Hand focuses on behavior and provides tools and suggestions for stopping problematic actions before they turn into bad habits. Topics covered include positive behavior support, addressing stubborn behavior, and more. In addition, the newsletter also highlights a new section of DSRF’s website that’s packed with resources on Down Syndrome and Alzheimer’s Disease. To read the newsletter, click here. 

WEBINARS

July 13: Preventing Burnout In Parents Of Children With Special Needs

Sponsor: Parent To Parent Of New York State

More information and registration here.

July 14: Medicaid Service Coordination: Getting The Most From Your Child’s Program

Sponsor: Parent To Parent Of New York State

More information and registration here.

July 20: Disability And Rehabilitation Resources

Sponsor: National Information And Referral Support Center

More information and registration here.

July 21: Delivering Culturally Confident Care: A 365 Approach

Sponsor: Home Health Quality Improvement

More information and registration here. 

July 21: Best Practices For Inclusion

Sponsors: Family Network On Disabilities & Florida Inclusion Network

More information and registration here. 

July 21: Three Perspectives On Creating Process And Standards For Care Coordination

Sponsor: Care Navigator

More information and registration here. 

July 27: Coordinating Care For Children In Families With Complex Social And Health Needs—Research And Practice

Sponsors: Lucile Packard Foundation For Children’s Health & Catalyst Center

More information and registration here.

July 27: Loss, Grief, And Adjustment For Parents Of Children With Special Needs

Sponsor: Parent To Parent Of New York State

More information and registration here. 

July 28: Taking Care Of Yourself As Caregiver Of A Family Member With A Developmental Disability

Sponsors: Children’s Hospital Los Angeles & University Of Southern California

More information and registration here.

Upcoming Webinar Series: Timeliness In Newborn Screening (July 13-August 31)

Sponsor: New York Mid-Atlantic Consortium For Genetic And Newborn Screening Services

More information and registration here. 

Upcoming Webinar Series: Serving On Groups That Make Decisions (July 14-October 13)

Sponsor: Statewide Parent Advocacy Network

More information and registration here.

ARTICLES

“July Edition Of Complex Child Magazine: Therapies“

“Teen Left In Limbo By FDA Inaction On Muscular Dystrophy Treatment”

“Doctors Get Creative To Soothe Tech-Savvy Kids Before Surgery”

“San Francisco Unified School District Disproportionately Suspends High Schoolers With Disabilities, New Data Shows”

“Service Dog Case Headed To Supreme Court“

“Black Children Die At An Alarming Rate In Sacramento County, And Here’s Why“

“Hope Still Races Ahead Of Evidence In Magnet Treatment For Autism“

“With Hippotherapy, The Horse Provides The Therapy”

“New CDC Funding Will Expand Knowledge About Children With Autism Spectrum Disorder“

“When I Was Diagnosed With Bipolar Disorder, People Thought I Was Cursed”

“Parents Of Special Needs Children Plan For Two Futures”

“Insurance Mandates Boost U.S. Autism Diagnoses“

“A Feel-Good Lip Balm, Created In Her Dorm”

Family Voices Provides Testimony At Advancing Care For Exceptional Kids Act Hearing

*This article was reposted from Family Voices and the orginal text can be found here.

Maria Isabel Frangenberg, representing Family Voices, addressed the Subcommittee on Health of the House Energy and Commerce Committee in its hearing to get comments from stakeholders about the draft ACE Kids Act (H.R.546). This legislation, sponsored by Representative Joe Barton (TX) and Kathy Castor (FL), currently cosponsored by 213 House members, gives state Medicaid programs the option to establish health homes for children with complex medical conditions.  It would provide two years of enhanced payments to states to help with implementation. The draft also requires increased quality reporting, transparency regarding payment across state lines, and guidance from the Centers for Medicare and Medicaid Services to states on best practices for payments across state lines.

Maria recounted the critical value of Medicaid to families of children/youth with special health care needs (CYSHCN). Children/youth with complex medical conditions, a subpopulation of CYSHCN, require highly specialized care, care from multiple providers, and often care from providers across state lines. Medicaid does not adequately provide these services and the ACE Kids legislation addresses these barriers. While Family Voices strongly supports the goals outlined in the ACE Kids Act, Family Voices recommends the following to enhance the positive impact of the legislation

• Establishment of federal qualification standards for health home providers
• Coordination of health homes with Family-to-Family Health Information Centers
• Engagement of families as partners in the development and implementation of health home policies and procedures; development of quality measures; and development of the definition of ‘child with medically complex condition’
• Education of families, in a linguistically and culturally competent manner, about health home services
• Requirement that states adopt best practices for providing access to out-of-state providers

Download the Family Voices witness statement here.

For the bill, a webcast of the hearing, and the testimony of other witnesses, click here.