This newsletter was sent April 22, 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 Annual Health Summit Highlights Report Now Available

This report recaps our 2016 Health Summit And Legislative Day and provides information on speakers and panel content, breakout sessions, legislative meetings, and conference feedback. To read the report, click here.

Statewide Network Of CCS Advocates Issue Document With Recommendations And Principles For The DHCS To Use In Their CCS Redesign Process

The document, “Principles For The Future Of The California Children’s Services Program,” recommends that the CCS redesign should address family partnerships, program standards, provider network, continuity of care, monitoring, and rates. We hope this information will assist individuals as they think about and advocate for improved services for children and youth with special health care needs. To read the document, click here.

Family Voices Of California Supports Two Key Foster Care Mental Health Initiatives

In conjunction with the National Center For Youth Law, Family Voices Of California wrote letters of support for SB 1291 and SB 1174. SB 1291 requires that county mental health plans create a subsection for youth and that they also include an annual foster care mental health plan that details the services available to these children. SB 1174 allows the Medical Board Of California to confidentially collect and analyze data, and, when warranted, look into physicians who frequently prescribe medication that is over the recognized safety parameters for children. To read the Daily Democrat’s related article on increased oversight of psychotropic medication use, click here.

Medi-Cal Expands To Include Undocumented Children

Beginning May 16, Medi-Cal will widen its coverage to incorporate undocumented children under 19. For those families exceeding a certain income bracket, a low-cost premium may be required. If you’d like to take action now, it’s suggested that children be placed in restricted Medi-Cal where they’ll be automatically enrolled in full-scope coverage on May 16. It’s anticipated that roughly 170,000 children will qualify for the program. Click here for a helpful one-pager, and here to read California Health Report’s article on ensuring proper outreach is done to encourage enrollment.

GIVE INPUT

Letter To DHCS: Recommendations For More Child-Focused Medi-Cal Health Indicators In 2017

You have the unique opportunity to help improve the quality of health care for more than half of California’s kids—many with disabilities. By signing the letter of support drawn up by Children Now, you’ll encourage the DHCS to collect data focused on ensuring that kids have the care they need to grow up strong—physically, emotionally, and cognitively. Reported data will also reflect patient satisfaction for families with children with special health care needs. To sign the letter, click here.

Study: Measuring Resiliency In Parents Of Children With Special Needs

Psychologists at East Tennessee State University are conducting a national study with the goal of learning more about the experiences of parents of children with special needs, how they cope with daily life stressors, and what the effects of care-giving have on their physical and emotional health. Rather than focusing on the negative aspects of family life, the researchers are motivated by positive psychological functions such as resiliency, coping strategies, and strength. If you’re a parent of a child with special needs, please consider taking 30 minutes to complete the confidential, anonymous survey by clicking here.

Study: When A Sibling Has Autism: The Effect Of Relationship On Affect

Researchers at the University Of South Dakota are looking at two relationship components, warmth and conflict, and how they’re impacted in relationships where one sibling has autism and the other is typically developing. The researchers hope to further the knowledge about these types of relationships in order to inform therapies or interventions to strengthen them. If you’re a parent of both a child with autism and a typically developing child, please consider taking the short survey (there will be a few questions for your typically developing child to answer as well). For more information on the study and to complete the survey, click here.

Upcoming CCS Advisory Group And Technical Working Group Meetings

May 11: CCS Data And Quality Measures Technical Working Group

June 3: CCS Care Coordination/Medical Home/Provider Access Technical Working Group

June 29: CCS Advisory Group Stakeholder Meeting

For information on these meetings, click here.

WEBINARS

April 26: Tips For Communicating With And Supporting The Non-Verbal Child

Sponsors: The Infant Development Association and the MAP To Inclusion And Belonging Project of WestEd Center For Child And Family Studies

Led by two pediatric speech language pathologists, this webinar is designed to help caregivers, teachers, and home visitors who work with non-verbal children think about communication development. To register, click here.

April 26: Pediatric Disaster Planning And Preparedness 

Sponsors: EMSC National Resource Center and ASPR TRACIE

ASPR TRACIE is a healthcare emergency preparedness hub that ensures all stakeholders have access to resources to improve preparedness, response, recovery, and mitigation efforts. In this webinar, two of their project directors will discuss their organization and how its resources can best assist individuals in their pediatric disaster planning efforts. To register, click here.

April 27: Genetics And Autism Spectrum Disorder

Sponsors: AIR-P and the Autism Treatment Network

In this webinar, Abha Gupta, MD, PhD, will provide a brief review of human genetics and the type of mutations researchers look for in association with ASD. She’ll focus on clinical genetic testing and then transition to the future direction and challenges in the field of ASD genetics. To register, click here.

April 28: Make Your Voice Heard: Enrollment Assisters In Public Policy

Sponsor: Families USA

Enrollment assisters have an important role to play in educating public officials and advocating on behalf of consumers. This webinar will teach you how to educate public officials about both your work and the communities you serve. It will detail how to use the Public Policy Toolkit For Enrollment Assisters and feature speakers who have been successful in engaging in advocacy. To register, click here.

April 29: A Conversation With State Officials On Medicaid Dental Managed Care

Sponsor: National Academy For State Health Policy

In this webinar, state policymakers from Arizona, Kentucky, and Pennsylvania—three states that administer Medicaid benefits through managed care contacts that include both medical and dental services—will share their insight on ensuring contractors and subcontractors maintain an adequate network of dental providers, provide outreach and care coordination to members, and promote quality improvement. To register, click here.

May 6: Don’t Forget The Dads! The Important Role Of Fathers In Child And Family Health

Sponsors: American Academy Of Pediatrics, FamilY Partnerships Network, and the Committee On Psychosocial Aspects Of Child And Family Health

Fathers play a very important role in a child’s health. However, they’re sometimes not included in the conversation or institutional biases may be present that discourage their involvement. This webinar will feature three expert fathers who will share research on this topic as well as anecdotal stories from other fathers. To register, click here.

RESOURCES

Graduate School Scholarships For People With Disabilities

Organized by Go Grad, this helpful guide provides a current list of graduate scholarships available for students with disabilities. In addition, it has information on navigating the graduate school landscape, tips for those with hearing and vision impairments, and ideas for additional funding resources. To browse the guide, click here.

Your Legal Toolbox: Special Education Law For Children With Behavioral Disorders

In this three-part radio series sponsored by the Coffee Klatch, parent and special education law expert Bonnie Shinagle discusses how to ensure children receive the right accommodations, proper education, and appropriate school/IEP placement under special education law. To listen to parts one and two, click here (scroll down to learn about part three, which will be released soon).

Access To Care For Children With Special Health Care Needs: The Role Of Medicaid Managed Care Contracts

This MACPAC report looks at how Medicaid managed care contracting terms ensure access to care for children with special health care needs. It presents findings from the analysis of state contracts supplemented with interviews with state Medicaid officials, managed care organization representatives, consumer advocates, and other stakeholders. To read the key findings or download the entire report, click here.

Helping Families Of Children With Special Needs Understand Deductibles

The latest blog post from the National Center For Family Professional Partnerships lays out one of the most confusing aspects for families of children with disabilities: deductibles. Many patients will choose plans with cheaper deductibles, and this often means fewer benefits. This could be especially troubling to families who have children with complicated health care needs. To read the blog post, click here.

SPECIAL EVENT

Understanding The Puzzle: 9th Annual Autism Spectrum Disorders Conference

Sponsored by Stanford Autism Center at Lucile Packard Children’s Hospital Stanford, this conference gives community members a chance to learn about new autism research and therapies. Keynote speakers include Catherine Lord, PhD, Peter Mundy, PhD, and various Stanford researchers. Parents, teachers, pediatricians, psychologists, caregivers, media, and anyone interested in autism are interested are invited to attend. For more information and registration instructions, click here.

ARTICLES

“CDC Confirms Zika Can Cause Brain Defects In Babies”

“Rural Kids Face Special Challenges When Seriously Ill”

“How To Get Your Kid To Do What You Say, Without Punishing”

“Netflix Agrees To Offer Audio Description Tracks On More Titles”

“California Formally Moves To Merge General And Special Education”

“Autism Wandering Bill Gains Momentum”

“New Polio Vaccine Rolled Out In Massive Worldwide Switch”

“Running To Beat Schizophrenia”

“Birth Spacing May Influence Autism Risk”

“Low Special Education Graduate Rates Haunt Educators”

“A Dearth Of Hospital Beds For Patients In Psychiatric Crisis”

“People Who Avoided Illness Could Be Key In Treating Those Who Didn’t”

“Parents Find Ways To Mitigate Bullying, Teasing”

“I Shouldn’t Have To Fight To Get My Son With Special Needs Into A Public School Classroom”

You can view the document below or download it by clicking here. We hope this information will assist you as you think about and advocate for improved services for children and youth with special health care needs.

This newsletter was sent April 8, 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

CDC: No Change In Autism Prevalence, Children Not Receiving Early Evaluations

While the estimated percentage of children with autism still remains high, the CDC reports there has been no change in the prevalence of reported diagnoses. They also note that children with autism are not receiving comprehensive developmental evaluations as early as they could be. To read a summary of the CDC’s key findings, click here.

Second Meeting Of Senate Select Committee On Children And Youth With Special Health Care Needs

The Select Committee, chaired by Senator Dr. Richard Pan, met for a second time on April 5 to discuss the barriers and challenges of interagency care coordination. Often, a child’s care map extends far and wide to include an immediate and external network. The committee’s goal is to break down silos of care so that children with special health care needs can have easier access to their support systems. To listen to or watch a recording of the meeting, click here.

CCS Redesign: State Rebuffed, Won’t Move Fragile Kids To Managed Care—For Now

After hearing testimony from families and providers, the Assembly budget subcommittee voted to hold off on phase one of the Department of Health Care Service’s proposal to transition nearly 20% of children with disabilities to managed care. The bill was voted on on March 14 and unanimously rejected. It has now been added to the Governor’s proposed budget. Read more in the California Healthline article here.

Family Voices of California: 14th Annual Health Summit & Legislative Day

We’d like to extend our heartfelt gratitude to all families, advocates, professionals, speakers, and sponsors that made this year’s Health Summit extremely successful! The conference took place on March 14 and over 138 people attended. Highlights included a keynote by Senator Dr. Richard Pan on the formation of the Senate Select Committee On Children And Youth With Special Health Care Needs, panel discussions on Medi-Cal Managed Care, the future of California Children’s Services programs, and mental health. The following day, 57 family members made over 25 legislative appointments at the Capitol. To see photos from the conference, click here, and to check out a list of our generous sponsors click here. A highlights report will be made available soon.

Family Voices Brings Project Leadership Training To AMCHP Conference April 6-9

Family Voices of California Project Leadership State Liaison Allison Gray traveled to Washington, D.C. to attend the Association of Maternal and Child Health Programs annual conference where she gave a poster presentation on Project Leadership, a parent advocacy training program developed by Family Voices of California council members. The title of her presentation was “Effecting Health Care Policy Change, One Parent at a Time.” Project Leadership is designed to help family members develop the skills and tools they need to partner at all levels of decision making and engage in public policy advocacy activities in California on behalf of children and youth with special health care needs.

Family Voices National: 2016 Leadership Conference

Over 150 family representatives from all 50 states attended the Family Voices National conference on March 30-31. This year’s theme was “Expanding Our Reach, Impacting The Future” and workshops ranged in topic from system changes at the local, state, and national level as well as recruiting adult and youth leaders and developing “value add” partnerships. For a look at the full conference brochure, click here.

WEBINARS

April 13: Take Action On Care Coordination

This webinar will feature a parent’s perspective, along with real-life examples from a provider and a payer, on how to develop effective local care coordination systems. It’s designed as a first step in building a national movement to promote care coordination policies and payment options that better serve children, families, and care providers. The discussion will center around the report, The Care Coordination Conundrum And Children And Youth With Special Health Care Needs, a summary of which can be ready here. To register, click here.

April 20: Approaches To Community Access, Participation, And Engagement For Children With Developmental Disabilities And Their Families

Led by Roger Ideishi, this webinar will address all things accessibility. For children with developmental disabilities, accessibility demands more than exposure and presence in the community. It should take into consideration opportunities that foster meaningful connections with the experience and create links to the physical, social, and cultural aspects of the environment. To register, click here.

April 21: Parents Taking Action: Empowering Latina Mothers of Children with Autism Spectrum Disorder

Despite the fact that Latino children are one of the fastest growing autism spectrum disorder populations, they are one of the most underserved groups with respect to diagnostic services, health care, and specialty autism services. This webinar will discuss the development of a culturally-based approach to addressing information needs of Latino parents. To register, click here.

April 28: The Rules Of Sex For People With Developmental Disabilities

A clinical psychologist specializing in sexuality and people with developmental disabilities, Nora Baladerian will discuss the do’s and dont’s of sex, different kinds of sexuality, possible outcomes of having sex, and when, where, and whom it’s okay to have sex with. To register, click here. 

RESOURCES

The Road To Recovery: Supporting Children With Developmental Disabilities Who’ve Experienced Trauma

This toolkit for providers offers information on supporting a child’s well-being, happiness, and recovery through a trauma-informed practice. To download, click here (you must create a profile).

What Families Need To Know About Changes In Special Enrollment Periods

This tip sheet provides information on two major policy changes related to special enrollment periods in the marketplace. You’ll be able to quickly review a list of qualifiers that have been eliminated and added. To download, click here.

Getting And Keeping Health Care Coverage For Low-Income Californians: A Guide For Advocates

Organized by the Western Center For Law And Poverty, this guide provides advocates with the relevant statutes, regulations, and guidance needed to help their clients access health care coverage. To download, click here.

ARTICLES

“CCS Medical Directors Tackle Thorny Issues” 

“Bill Seeks Benefits For Caregivers”

“More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults”

“Tiny Opioid Patients Need Help Easing Into Life“

“New Model For Meeting The Needs Of The Most Fragile Children”

“Program Helps Families Address Developmental Concerns”  

“Hillary Clinton Takes A Stand Against ‘Subminimum Wage’ For People With Disabilities”

“President’s Task Force Aims To Help End Discrimination In Mental Health Coverage”

“What Happens When The Online Bully Is A Child With Special Needs”

“A Day With A Sixth-Grader: How One School Supports a High-Needs Student” 

“Student Suspensions In California Charter Schools Follow Familiar, Troubling Patterns”

A new report from the National Center on Birth Defects and Developmental Disabilities‘ Autism and Developmental Disabilities Monitoring Network shows that many children who are living with Autism Spectrum Disorder (ASD) are not receiving comprehensions evaluations when developmental concerns are initially identified. As these children need services and support both now and as they mature into adolescence and adulthood, more needs to be done to ensure they are evaluated as soon as possible.

If you’d like more information on the network’s study, please read the full report or check out the summary of the key findings. The key findings report has  identified five important takeaways:

1. The estimated percentage of children with ASD remains high.

About 1 in 68 or 1.5% of children were identified with ASD based on tracking in 11 communities across the United States in 2012.

• According to previous reports, the percentage of children identified with ASD increased between 2002 and 2010.
• The new report shows no change between 2010 and 2012 in the percentage of children identified with ASD.

2. It is too soon to tell if the percentage of children identified with ASD is still increasing or has stabilized.

Here are two reasons why it is too soon to tell:

• While the average percentage of children identified with ASD in all 11 communities stayed the same, in two communities, the percentage of children identified with ASD increased significantly between 2010 and 2012.
• The percentage of children identified with ASD ranged widely by community—in communities where both health and special education records were reviewed, estimates ranged from a low of 1.2% in parts of South Carolina to a high of 2.4% in parts of New Jersey.

CDC will continue to track ASD over time so as to better understand if the percentage of children identified with ASD is staying the same or continuing to increase.

3. Children identified with ASD are not receiving comprehensive developmental evaluations as early as they could be.

Most children identified with ASD had concerns about their development noted in their health and/or special education records by age three years. Yet, less than half of children with ASD received a comprehensive developmental evaluation by this same age. A lag between first concern and first comprehensive developmental evaluation may affect when children are being diagnosed and connected to the services they need.

4. Black and Hispanic children are less likely to be identified with ASD. Those that are identified with ASD receive comprehensive developmental evaluations later than white children who are identified with ASD.

Previous research has not shown that black or Hispanic children have a lower risk than white children to develop ASD. However, since ADDM data showed that black and Hispanic children were less likely to be identified with ASD, it is possible that these children face socioeconomic or other barriers resulting in a lack of or delayed access to evaluation, diagnosis, and services.

5. Schools play a vital role in evaluating and serving children with ASD.

The percentage of children identified with ASD was highest in all communities combined where both health and special education records were reviewed compared to all communities combined where only health records were reviewed.