This newsletter was sent May 17, 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

Assemb. Tony Thurmond Appointed To State Interagency Coordinating Council On Early Intervention

Governor Brown announced the appointment of Assemblymember Tony Thurmond to the State Interagency Coordinating Council (ICC) On Early Intervention in a May 11 press release. Comprised of parents of children with disabilities, early intervention service providers, health care professionals, and state agency representatives, the ICC encourages a family-centered approach, interagency collaboration, and provides advice and assistance to the Department Of Developmental Services. Assemblymember Thurmond has proven to be a strong champion for children and youth with special health care needs (CYSHCN) and fills a legislative position on the ICC that has been empty for nearly a decade. To read more about the ICC, click here.

Amendments Made To SB 586, California Children’s Services Redesign Bill

Senate Bill 586 addresses the future of California Children’s Services (CCS) and the proposed plan to transition some children currently covered by CCS into managed care. Amendments to the bill were much in line with statewide advocates’ recommended principles and deal with processes and protections that ensure CYSHCN are given the best systems of care possible. All further amendments to the bill will be addressed in the policy bill process. To read the revised version of the bill, click here.

Governor Brown Passes State Budget, Revisions Include Modest Spending Increases

On May 13, Governor Brown released California’s 2016-2017 revised budget plan. Although it contains minimal spending increases, the budget does implement several proposals aimed at improving economic stability, including funding for Medi-Cal and services for people with developmental disabilities. A large revision allows for resources to cover the thousands of undocumented children who are now eligible for Medi-Cal. To read highlights from the revised budget, click here.

How The Final Managed Care Rule Applies To Children And Youth With Special Health Care Needs

The Centers For Medicare And Medicaid Services (CMS) recently published its final rule which updates managed care guidelines. According to preliminary analysis from the National Academy For State Health Policy (NASHP), the rule gives states significant flexibility in making changes designed to modernize Medicaid and Children’s Health Insurance Programs while improving quality of care. As for how the rule applies to CYSHCN, states retain the ability to enroll some or all of their CYSHCN in managed care, and states that mandatorily enroll these children will need to ensure their families have the option to change health plans. To read a blog post from NASHP on how the final rule further applies to CYSHCN, click here, and to check out a list of upcoming CMS webinars on the final rule, click here.

Senator Lara Stops In San Francisco On Statewide Tour To Promote Enrollment In New Medi-Cal Expansion For Undocumented Children

Joined by various elected leaders and community partners, Senator Ricardo Lara gave a press conference on May 12 at the Mission Neighborhood Health Center in San Francisco. As part of his seven-stop outreach and enrollment “#Health4AllKids” tour, Senator Lara and advocates provided insight to attendees and families on the new expansion, which officially went into effect yesterday. An estimated 170,000 are now eligible for health care. To read more about the enrollment tour and new law, click here.

GIVE INPUT

Are You Prepared For An Emergency? Create A Short Video To Help Inspire Other Families Of CYSHCN To Think About Disaster Planning And Win $100

Preparing for an emergency is especially critical for families of CYSHCN. In order to spread disaster preparedness awareness, Family Voices National is running a video contest in hopes of spotlighting real stories that show how emergencies can impact families of CYSHCN. Accepted videos will win $100. Submissions can be simple cell phone stories ranging from 1.5-3 minutes in length, and videos must be submitted by May 31. For more information, click here.

Support AB 2004: Hearing Aids For Minors

On May 4, the California Assembly Health Committee voted in favor of AB 2004, sending the bill to the Assembly Appropriations Committee. AB 2004 requires that health care service plan contracts or health insurance polices renewed on or after January 1, 2017 cover hearing aids for enrolled minors. As the bill is being reviewed by the Appropriations Committee, it’s important that they hear from families about why they support AB 2004 and how it would impact them. To show that you’re behind the bill, consider writing a letter of support. You can find a sample letterhere. Email your letter to Lisa Murawski, the appropriations consultant for the bill, and Nardos Girma, assistant to author Assemblymember Richard Bloom. To read more about AB 2004, click here.

RESOURCES

Publication: Designing Systems That Work For Children With Complex Health Care Needs

The Lucile Packard Foundation For Children’s Health led a December symposium titled “Designing Systems That Work For Children With Complex Health Care Needs” aimed at discussing issues such as care coordination, national health policy, self-management support, and financing. To read the proceedings from the symposium that elaborate on potential solutions and ongoing issues in systems of care, click here.

Accessible Technology Resource Page Added To ADA.gov Website

Addressing enforcement, technical assistance, regulations, and technology initiatives, this new section of ADA.gov is a hub for all things assistive technology (AT). Among other things, you can access sample letters to help covered entities understand their ADA obligations with regard to AT, access a catalogue for accessibility best practices, and browse federal initiatives. To view the page, click here.

New Condition-Specific Transition Toolkits Available From The American Association Of Pediatrics And Got Transition

In order to address the gap that occurs between pediatric and adult health care, the American Association Of Pediatrics released six new condition-specific toolkits modeled after Got Transition’s Six Core Elements Of Health Care Transition. Toolkit topics include: general internal medicine for adults with developmental and physical disabilities, cardiology, endocrinology, hematology, nephrology and rheumatology (gastroenterology coming soon). To access the toolkits, click here.

Join The Lucile Packard Foundation For Children’s Health Newsletter!

Published twice a month, this newsletter provides excellent resources for families of CYSHCN. To sign up and also view past issues of the network newsletter, click here.

WEBINARS

May 18: The Relationship Between Fetal Alcohol Spectrum Disorders And Attention-Deficit Hyperactive Disorder

Sponsor: National Organization On Fetal Alcohol Syndrome

More information and registration here.

May 19: Reducing Stress In Children With Learning And Attention Differences

Sponsor: Learning Ally

More information and registration here (you must first create a free account).

May 23: Medical Home: Patient Centered Communication

Sponsors: The Johns Hopkins School Of Medicine and the New-York Mid Atlantic Consortium For Genetic And Newborn Screening Services

More information and registration here.

May 24: The Disability Integration Act And Why It Matters To You

Sponsor: United Spinal Association

More information and registration here.

May 25: Coordinating Care For Kids: School Nurses Linking With The Medical Home

Sponsor: National Center For Medical Home Implementation

More information and registration here.

May 26: Coding For Chronic And Transition Care Management And Pediatrics

Sponsors: The Lucile Packard Foundation For Children’s Health and the American Academy Of Pediatrics

More information and registration here.

May 26: Becoming ABLE Ready: Choosing The Right Program For You

Sponsor: National Disability Institute

More information and registration here.

May 31: Changing Relationships: How To Foster Effective Communication With Patients And Families

Sponsor: National Center For Medical Home Implementation

More information and registration here.

June 14: Emerging Treatments In Sickle Cell Disease

Sponsor: California Sickle Cell Resources

More information and registration here.

UPCOMING CONFERENCES

June 25-28: Spina Bifida Association—41st Annual National Conference, Bloomington, MN

For more details, click here.

November 10-13: The National Federation For Children’s Mental Health—27th Annual Conference, Phoenix, AX

Further details, including a call for presentation proposals, will be available in the next two weeks. Visit FFCMH’s website to find out more.

ARTICLES

This newsletter was sent May 3, 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

Family Voices Of California Parent Advocates Learn The Art Of Op-Ed Writing

On April 23, California Health Report editor Daniel Weintraub led a special seminar for Project Leadership graduates called “The Art of Opinion Writing: An Advocacy Tool.” Participants learned how to envision and write an opinion article and received tips on increasing their chances for publication. In total, 14 parents attended this productive working seminar where they outlined and drafted their opinion pieces and received individualized feedback from Daniel. As the parent voice is a strong one, Daniel will continue to guide parents in fine-tuning these articles and help them spread their opinions spread far and wide as influential advocacy pieces.

National Children’s Mental Health Awarness Week: May 1-7

Sponsored by the National Federation Of Families For Children’s Mental Health, this year’s awareness week theme is “Healthy Families, Resilient Children: Mental Health Is A Family Affair!” The campaign encourages us to increase education surrounding early prevention and identification and stresses that healthier family units are better equipped to support a resilient child. Eric Walton was 13-years-old when he was diagnosed with bipolar disorder and, looking back on his journey, offers these words of wisdom: “Mental illness should be treated with respect and kindness, not fear and stigma. People with mental illness are all human beings. And they deserve the same respect as anyone else.” To read about how talking openly against stigma with his mother helped Eric cope with his diagnoses, click here.

New SIDS Study Launches This Month: Could Inner-Ear Problems Be The Issue?

Doctor Daniel Rubens, an anesthesiologist at Seattle Children’s Hospital, partnered with the Lullaby Trust to conduct a two-year SIDS study that will begin this month. The study will investigate how possible inner-ear defects dull a baby’s automatic need to reposition itself when sleeping. They believe this can cause breathing issues, decreased oxygen, and eventual suffocation. To read more about the OASIS study, click here.

GIVE INPUT

Survey: Barriers To Employment For People With Disabilities

Researchers at the Rehabilitation, Research, And Training Center On Employment Of People With Physical Disabilities want to better understand what barriers people with disabilities face in regards to employment, work support, and means of obtaining information about employment services and strategies. In order to participate in the survey, you must be between 18-65 and have a physical disability. To take the survey, click here.

WEBINARS

May 11: School Budgets And Equity: What Do Parents And Community Groups Need To Know?

Sponsor: Children Now

This webinar will unpack the Local Control Funding Formula (LCFF), or new school finance law. The LCFF creates the promise for greater school equity by giving parents and the community a say on how to best serve vulnerable students in the budget. The LCFF will be simplified and parents will learn how to effectively partner in this important decision-making process. To register, click here.

May 12: Changing Perception: How To Build Cultural Competence And Humility

Sponsor: National Center For Medical Home Implementation

This webinar will define cultural competency and discuss the importance of recognizing diversity among patients, families, and clinicians. Participants will learn how to acknowledge and minimize unconscious biases in order to build cultural competence and quality of care among professionals and family advocates. To register, click here.

May 25: Integrating Health Into The Transition Individualized Education Plan

Sponsor: Statewide Parent Advocacy Network Of New Jersey

In this webinar, participants will learn why health is important to post-secondary eduaction, employment, and independent living as well as how to address these topics in the IEP. To register, click here.

ASK Webinar Archive

For a great list of archived webinars on a variety of subjects having to do with children and youth with special health care needs, click here (some are offered in Spanish). Sample topics include requesting a special education evaluation, building toward success in adult life, water safety and children with special needs, and traveling with a disability.

RESOURCES

Report: Expanding Access To Care For Maternal And Child Health Populations In California

As part of the Alliance For Innovation On Maternal And Child Health program, the American Academy Of Pediatrics surveyed patients, families, and providers to better understand impediments to care and coverage. The report notes a common thread of frustration from families of children with special health care needs as they’re told the sooner they receive care, the better their children’s outcome will be. However, they’re often unable to access this care due to lack of providers or out-of-pocket cost. To read the full report, click here.

Your Legal Toolbox: Special Education Law For Children With Behavioral Issue: When Emotions Run High

Part three of The Coffee Klatch’s “Your Legal Toolbox” series is now available. In this podcast, parent and attorney Bonnie Shinagle will discuss all things emotion. Leading off with the question, “what’s the most overwhelming part of being a parent of a child within the special education system,” Bonnie will discuss how to keep your cool when dealing with adversarial members at committee meetings and transition into other topics having to do with public advocacy. To listen to the podcast, click here.

Personalized Learning: Meeting The Needs Of Students With Disabilities

After surveying 1,800 parents of children with learning disabilities, the National Center For Learning Disabilities discovered that the majority of parents weren’t familiar with personalized learning. Bringing together top experts, the NCLD created a comprehensive set of policy and practice recommendations that address best practice for families, educators, district leaders, policymakers, and everyone who has a role in ensuring that students with disabilities succeed in school. To read the recommendations, key considerations, and roadmaps for parents and educators, click here.

Study: Dynamic Motor Control Is Associated With Treatment Outcomes For Children With Cerebral Palsy

In this study, researchers found that data from an electromyography, a common procedure used to monitor muscle activity, could determine whether surgery to lengthen tendons, rotate bones, or transfer muscles to new locations would be the best route for children with cerebral palsy. They found that better dynamic motor control was associated with better outcomes, regardless of treatment. To read the study, click here.

Report: The Care Coordination Conundrum And Children And Youth With Special Health Care Needs

In a new report funded by the Lucile Packard Foundation For Children’s Health, the authors discuss why care coordination has been insufficiently financed and reimbursed, and what can be done to address the many challenges of providing and paying for care coordination for children and youth with special health care needs. To read the report, click here.

Find A Home Health Agency In Your Community

In this new section of the Medicare.gov website, you can search for and compare home health agencies using patient survey star ratings. The data is updated quarterly. To access the website, click here.

ARTICLES

“FDA Moves To Ban The Use Of Shock Devices On Those With Special Needs”

“Perinatal Hospice Care Prepares Parents For The End, At Life’s Beginning”

“St. Louis Doctors Among 20 In U.S. Treating Hydrocephalus Without A Shunt”

“Cities Begin To Count The Scars Of Childhood And Try To Prevent The Damage”

“University Of Pittsburgh Students Demand More Visible On-Campus Representation”

“Foster Use Drug Prescription Under Scrutiny In Sonoma County”

“At UCSF Benioff Children’s Hospital Prom, Teen Feels Happy With People ‘Like Me.”

“A Birth That Launched The Search For A Down Syndrome Test”

“New RX For Kids: Get Outside And Move”

“Bill To Limit ADA Compliance “Abusive Lawsuits” Heads To Governor Brown”

“Schools Must Provide Special Education To Children, Regardless If They’re Vaccinated“