CA Ranks #37 In Child Well-Being, Autism Indicators Report, & Rural Kids & Medicaid

fvca Latest News June 26, 2017June 26, 2017

This newsletter was sent June 20, 2017. 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.

The Senate may vote on the proposed health care bill (the Better Care Reconciliation Act) before their scheduled recess the beginning of July. Continued advocacy over the duration of the month is critical to ensure the legislation to repeal and replace the Affordable Care Act does not pass. The bill would completely restructure California’s Medi-Cal program by imposing cuts and caps, threatening care for children with special health care needs.

While we know California’s Senators will be voting against the the bill, it’s still important to let them know you strongly support this decision.

If you have friends or family living in the following key states, consider asking them to contact their own Senators (information on how to do so here): Alabama, Alaska, Arizona, Colorado, Georgia, Indiana, Louisiana, Maine, Missouri, Montana, Nebraska, Nevada, Ohio, Pennsylvania, West Virginia, and Wisconsin.

For email templates, phone scripts, social media tools, and other resources to tell Senators why Medi-Cal/Medicaid is essential, click here.

House ACA Repeal Puts Children With Disabilities And Special Health Care Needs At Severe Risk

Americans Across The Political Spectrum Agree: Cutting, Capping And Restructuring Medicaid Is A Bad Idea (survey results)

RESOURCES

Report: Medicaid In Small Towns And Rural America: A Lifeline For Children, Families, And Communities

A new report from the Georgetown University Center For Children And Families found that individuals living in small towns and rural areas would be hit the hardest by Medicaid cuts. In 14 states including California, more than half the children living in rural areas are enrolled in Medicaid. The report authors acknowledge that kids would be “disproportionately harmed” should changes to the program be made. To read the report, click here.

California’s Rural Counties Benefit Most From Government Health Coverage

Republican Proposal To Repeal ACA And Cut Medicaid Would Harm Rural Towns

Note: The Centers For Medicare & Medicaid Services recently released a new Medicaid final rule that addresses specialty care access standards for people living in small towns and rural counties vs. those living in larger counties. If you think your family might be impacted by the implementation of this rule or you’ve ever had challenges accessing Medi-Cal in your rural area, please contact FVCA by responding to this newsletter or calling (415) 282-7494.

National Autism Indicators Report: Developmental Disability Services And Outcomes In Adulthood

A new report from the A.J. Drexel Autism Institute found that, as demonstrated in years past, state-provided disability services often fail to meet the needs of adults with autism. The annual publication surveyed an estimated 111,000 people diagnosed with autism spectrum disorder during their transitions to adulthood. Many reported they had a difficult time achieving employment, continuing their education, living independently, and were overall dissatisfied with their quality of life. Although individuals used an average of six different state service, the report notes that families end up shouldering much of the care. To read the report, click here.

2017 Kids Count Data Book: State Trends In Child Well-Being

The Annie E. Casey Foundation has released their annual data book which ranks how American children are faring based on four markers: economic well-being, education, health, and family and community. Each of these markers includes four separate indicators, such as ‘children in poverty’ or ‘low birth-weight babies.’ California’s overall rank was 37 (36 last year), with an economic well-being rank of 46, education of 38, health of 9, and family and community of 42. To read the report, click here, and to read a summarizing article, click here.

OPPORTUNITY FOR INPUT

Conference: Bridging Pathways To Quality Health Care For People With Special Needs

The San Gabriel/Pomona Regional Center, in collaboration with the University Center For Excellence In Developmental Disabilities, is hosting a multidisciplinary conference for health care professionals on August 12 in Pomona, CA. The conference is designed to enhance community knowledge about working with and caring for individuals with special health care needs. For more information, click here.

Funding Opportunity: Models For Enhancing Home And Community-Based Services

The Administration For Community Living (ACL) is looking to support models of home and community-based services (HCBS) that increase integration and independence for people with disabilities. The models must address the development of a system that uses community and state-level partners to monitor safety and identify risk factors for neglect and exploitation. They must also demonstrate evidence-based practices and innovative strategies that seek to improve services for people with disabilities. For more information, click here.

Related ACL webinar (June 28): The Home And Community-Based Services Quality Framework Development

Upcoming Advocacy Trainings On AHCA And Children With Special Health Care Needs

The Children’s Hospital Association is partnering with various organizations to present a series of skill-building workshops on the proposed American Health Care Act (AHCA) and how family, caregivers, and providers of children with special health care needs can best engage with members of Congress to tell their stories:

June 27, 10am-12:30pm at Valley Mountain Regional Center in Stockton. Register here.

June 29, 7pm-9pm at North Los Angeles Regional Center in Santa Clarita. Register: losangeles@scdd.ca.gov or call (818) 543-4631

June 30, 10am-12pm at Hesperia Library in Hesperia . Register here.

Related: The Faces Of Medicaid

Survey: Institute On Disability/UCED Seeks Feedback On Improving Range Of Programs

The Institute On Disability at the University Of New Hampshire is looking for consumer feedback regarding the scope of their programs and services. To take their satisfaction survey, click here.

WEBINARS

June 21: Rethinking Young Fathers: Policy And Practice Recommendations For Child Welfare Systems

Hosted by: The Center For The Study Of Social Policy

More information and registration here. Accompanying report here.

June 21: Advocacy 101: How To Influence Policies And Improve Lives

Hosted by: Food Allergy Research & Education

More information and registration here.

June 21: Organizing To Protect Health: How Public Health Can Fight Cuts To Medicaid And SNAP

Hosted by: Public Health Awakened

More information and registration here.

June 22: FY2018 Budget

Hosted by: The National Center For Birth Defects And Developmental Disabilities

More information and registration here (replaces the previously scheduled June 12 webinar).

June 22: Potty Time! A Journey To Successful Toilet Training

Hosted by: Down Syndrome Affiliates In Action

More information and registration here ($25).

June 27: Braiding And Blending Funds To Meet Health-Related Social Needs: Lessons From Louisiana And Virginia

Hosted by: The National Academy For State Health Policy

More information and registration here.

June 27: Intro To Fetal Alcohol Spectrum Disorders: The Medical Assistant’s Role

Hosted by: The National Organization On Fetal Alcohol Syndrome

More information and registration here.

June 27: RARE Patient Impact Grant Q&A

Hosted by: Global Genes

More information and registration here.

June 27: Novel Approaches To Public Health

Hosted by: The Public Health Institute

More information and registration here.

June 28: The Home And Community-Based Services Quality Framework Development

Hosted by: The Administration On Community Living

More information and registration here.

ARTICLES

Medi-Cal Cuts Will Eliminate Or Reduce Access To Necessary Services (and the rest of NHelp’s ‘Protect Medi-Cal blog series, found here)

The Myth Of Disability ‘Sob Stories’

I Lost My Voice, But Help Others Find Theirs

On Being Joe’s Mom: Why Inclusion Is Important to This Mother

As She Operated On Babies’ Birth Defects, A Doctor Hid Her Own Diagnosis

California Schools Respond To Students’ Fears Of Trump Immigration Policies

Isabelle Rapin, Who Advanced Concept Of An Autism Spectrum, Dies At 89

Zika In America: One Mother’s Saga

California Nixes Plan To Offer Full Medicaid Benefits To Undocumented Young Adults

Wisconsin Family Stays Together With Help From Medicaid

At Airports, Making Travel Easier For Autistic Passengers

Shared Decision-Making, Fragile X Syndrome, & Psychotropic Drugs

fvca Latest News June 7, 2017

This newsletter was sent June 6, 2017. 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.

Reminder: Let your Senators know why Medi-Cal is critical to children and youth with special health care needs & urge them to vote ‘no‘ on the American Health Care Act. Resources here.

NEWS

$80,000 Allocated In Budget To Fund Psychotropic Drug Reviews For Foster Youth

The National Center For Youth Law announced that their campaign to include an additional $80,000 in the state budget for stricter guidelines surrounding foster youth and psychotropic drugs was successful. Over-medicated children can face serious, lifelong health consequences including morbid obesity, diabetes, and cardiovascular damage. If approved by Governor Brown, the $80,000 would ensure foster children are prescribed psychotropic medications within safety thresholds, and that all kids on these drugs would have access to a psychiatric review no matter where they live. As it stands, many counties are not able to provide this third party review due to a shortage of child psychiatrists within California. For more information, click here.

DHCS Releases Final Evaluation Designs For Medi-Cal 2020 Initiatives

The Department Of Health Care Services (DHCS) has submitted final designs to evaluate four programs under California’s Medi-Cal 2020 demonstration for approval by the Centers For Medicare & Medicaid Services (CMS). DHCS developed the final evaluation designs in response to CMS’ comments and stakeholder feedback on draft evaluations. Over the course of the demonstration period, DHCS must specify methods to determine and analyze the impacts of the following programs: the California Children’s Services pilot, the Dental Transformation Initiative, the Global Payment Program, and services for Seniors and Persons with Disabilities. For more information, click here.

RESOURCES

National Title V Children And Youth With Special Health Care Needs Program Profile

The Association Of Maternal & Child Health Programs has released a new report based on a survey of state and territorial agencies that provide services with federal Title V funding. It explores children and youth with special health care needs programs, the roles they play in systems of care, partnerships, financing of care, and emerging issues. To read the report, click here.

AAP Issues Guidance On Pediatrician’s Role In Shared Decision-Making For Children With Disabilities

In a new report from the American Academy Of Pediatrics (AAP), researchers acknowledge the pediatrician’s central role in the many decisions that come forth when raising a child with a disability. The guidance urges pediatricians to ensure information is “exchanged in both directions” between themselves and families. They should also take all values and priorities into account. Stressful health care situations that arise for families of children with disabilities and their care teams can sometimes prevent a decision, and the AAP’s guidance offers information and clinical tools for shared decision-making, or a framework that promotes family and clinical collaboration, that can help all parties arrive at the best treatment plan. To view the guidance, click here, and to read an article summarizing the report, click here.

New AAP Supplement On Current Knowledge, Research Regarding Fragile X Syndrome

A new supplement in this month’s issue of Pediatrics summarizes current knowledge of fragile X syndrome and reinforces the pediatrician’s role in early identification and working with families to improve outcomes and quality of life. It also discusses the importance of genetic testing in attempt to reach an actual diagnosis. To read the supplement, which consists of eight articles, click here, and to read an article summarizing findings, click here.

OPPORTUNITY FOR INPUT

Rare Disease Research Grants Now Available: Applications Due June 23

The National Organization For Rare Disorders is offering research grants for the study of five specific disorders: alveolar capillary dysplasia with misalignment of the pulmonary veins, appendix cancer and pseudomyxoma peritonei, cat eye syndrome, malonic aciduria, and post-orgasmic illness syndrome. Initial applications due June 23. For more information, click here.

Youth With Disabilities Encouraged To Join Sacramento’s Disability Action Day

The Disability Action Coalition is hosting its annual Disability Capitol Action Day in Sacramento on June 13, and YO! Disabled & Proud is calling on all youth with disabilties 16-28 years old (and their allies) to participate. Throughout the day, attendees meet with their legislators and discuss key bills. YO! hopes to focus on improving translation services during Individualized Education Plans (SB 354), suicide prevention in K-12 and college (AB 917 and AB 1318), and ensuring that fee waivers continue to aid lower-income students (AB 204). For more information, click here or email Yolanda at yolanda@cfilc.org.

WEBINARS

June 12: 2018 Fiscal Year Presidential Budget Review

Hosted by: The National Center On Birth Defects And Developmental Disabilities

More information and registration here.

June 13: Innovative Health Care Financing Strategies For Children And Youth With Special Needs

Hosted by: The Catalyst Center and The American Academy Of Pediatrics

More information and registration here. Check out the accompanying supplement in Pediatrics, which contains eight articles analyzing value-based purchasing and value-based insurance design in relation to children with special needs.