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.