This newsletter was sent May 9, 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.

House Passes Health Care Bill — Advocacy Must Continue As AHCA Heads To Senate

The House passed the American Health Care Act (AHCA) on May 4, a measure to repeal and replace the Affordable Care Act. The vote was close — 217-213 — with 20 moderate Republicans voting against the bill. This was a direct result of the incredible advocacy of so many. Although disappointing, this is only the first in a number of steps for the AHCA to become law.

Now, the fight moves to the Senate. While we don’t expect that the AHCA can pass the Senate as is, we need to continue our aggressive advocacy to prevent any version of the bill from passing — particularly one that decimates Medicaid/Medi-Cal and threatens services for children and youth with special health care needs. For ideas on what to do next, click here.

RESOURCES

Action Brief: Transitioning To Adult Care: Supporting Youth With Special Health Care Needs

This brief produced by Children’s Hospital of Philadelphia’s PolicyLab acknowledges youth with special health care needs face unique issues as they transition to adult care, and that challenges during this period can lead to lapses in coverage, reduced access to services, and emergency room visits. Researchers surveyed providers, patients, and families to understand what barriers transitioning youth face, and what institutional supports are in place to help. In this brief, these barriers are identified and PolicyLab provides recommendations for providers, health care systems, and policymakers to help ease the transition process To read the brief, click here.

Data Brief: Family Caregiver Support For People With Disabilities

Results collected by The Arc from a survey on family and individual needs for disability supports showed that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities. The ensuing research brief details the kinds and amount of supports provided by family caregivers to individuals living in their home. Over half of survey respondents reported caring for someone between the ages of 10-30, and 40% stated they provide more than 80 hours of care per week. Emotional support, transportation, and cooking/housekeeping ranked as the top three kinds of support. To read the data brief, click here.

Related: Video: hear from people with disabilities on how their siblings support them, and what could be improved.

Policy Brief: Access To Mental Health Services For Children In Rural Areas

This brief from the Centers For Disease Control And Prevention presents a selection of potential policies and practices that may help rural children with mental, behavioral, or developmental disorders better access behavioral health services. These polices and practices include telemedicine, integration of behavioral health and primary care, and school-based care. To read the brief, click here.

Related: Supply And Demand For Child And Adolescent Mental Health Services & May 18 webinar on Project ECHO (Extension For Community Health Care Outcomes).

New Resources For Cultural Competency In Medicaid And Medicare Enrollment

Medicaid and Medicare enrollees are diverse in race and ethnicity, language, health condition, disability status, and other characteristics. Providing culturally competent care means respecting individuals’ varying beliefs and meeting their social, cultural, and linguistic needs. Resources For Integrated Care has released a new page of resources to support providers and health plans serving Medicaid and Medicare in offering culturally competent care. There’s information on culturally and linguistically appropriate services (CLAS), improving equity and reducing disparities, data sources, and more. To access the resources, click here.

OPPORTUNITY FOR INPUT

Survey: Researchers Examining Special Education Within MENASWA Community

The Center For Teaching And Learning at California State University Northridge is gathering demographic data about Middle Eastern, North African, and Southwest Asian (MENASWA) families of children with special needs who are part of special education programs. Researchers are hoping to to identify which strategies for serving students with disabilities are the most helpful as perceived by MENASWA families. To take the survey, click here.

Survey: Young Adults With Pediatric Rheumatic Diseases Can Help Inform App

Mobile app developers are looking for young adults with pediatric rheumatic diseases (and their parents) to take a survey that will help with the creation of a smartphone app aimed at supporting transition from pediatric to adult centered care. To take the survey, click here.

Letters Of Support Needed For AB 1610: Pediatric Hearing Aid Insurance Coverage

California Hands And Voices is asking for letters backing AB 1610, a measure which would require health insurance policies and health care service plans to cover hearing aids for individuals 18 years-old-and younger. Letters can be emailed to Lorena Gonzalez Fletcher, chair of the Committee on Appropriations, at nardos.girma@asm.ca.gov.

SAVE THE DATE

June 13, Sacramento CA: Statewide Disability Community Resource Fair. Booth registration information here, general registration here.

August 12, Pomona CA: Breaking Barriers, Developing Possibilities: Bridging Pathways To Quality Health Care For People With Special Needs. More information here.

October 5-6, Houston TX: 18th Annual Chronic Illness And Disability Conference: Transition From Pediatric To Adult-Based Care. More information here.