Posted March 16, 2017
News, policy updates, resources, events, and advocacy opportunities
Senate Select Committee on Children with Special Needs to Meet
Monday, April 3
10 to 11:30 a.m. Pacific Time
State Capitol Room 3101
Family engagement in policymaking is the topic for the third informational hearing of California’s Senate Select Committee on Children with Special Needs. The committee’s goal is to identify ways to strengthen and integrate systems of care to benefit children, youth, and their families and to build partnerships among stakeholders. Prior hearings of the committee, which is chaired by Sen. Richard Pan, focused on mapping the current system of care and funding, and examining interagency care coordination. See the agenda and list of speakers (PDF).
Legislature Addresses Disparities in Regional Center Purchase of Services
Family members, advocates, and state officials testified about disparities in services provided by the state Regional Center system at a March 14 oversight hearing of the Senate Human Services Committee. Racial and ethnic inequities in purchase of services have been long documented, and Committee Chair Sen. Scott Wiener commented that "we need better progress." Watch the hearing and see the committee’s background materials (PDF), as well as joint recommendations (PDF) prepared by the Special Needs Network Inc. and Public Counsel.
Bill Addresses Medi-Cal Rates for In-Home Nursing Care for CSHCN
Advocates are seeking support for Assembly Bill 654. The bill would require the Department of Health Care Services to establish an enhanced payment program for home health agencies that treat children receiving continuous nursing care or private-duty nursing at home through Medi-Cal. Many families currently struggle to find care, in part because of low reimbursement rates. Read a fact sheet (PDF) from the bill's sponsor that includes contact information.
California Children's Services
CCS Advisory Group to Meet on April 12
Wednesday, April 12
10 a.m. to 3 p.m.
1700 K Street, Sacramento, First Floor Conference Room
Dial-in: (888) 989-6488; Passcode (listen only): 1945234
Agenda and details to be posted.
Advocates Urge Action on Medicaid Proposals
Many organizations are releasing information about how potential changes to Medicaid and the ACA could affect children, including those with special health care needs. Advocates are requesting organizations to take action by March 20 by filling out a google form that urges Congress to protect health coverage for children and families. The Consortium for Citizens with Disabilities has created a toolkit (PDF) of actions individuals can take as Congress is considering the changes.
- Family Voices of California has prepared a fact sheet (PDF) on key services/programs that children with special health care needs currently receive under Medi-Cal.
- The Georgetown Center for Children and Families produced a series of Medicaid Fact Sheets, including several on how restructuring Medicaid could affect children.
- The National Health Law Program describes Top 10 Changes to Medicaid Under House Republicans' ACA Repeal Bill, noting the impact on families living with children who need extensive care.
Related Webinar: Protect Medicaid Series—Consumer Protections
Friday, March 24
11 a.m. to 12 p.m. Pacific Time
National Health Law Program
Will describe how efforts to impose Medicaid per capita caps or block grants will endanger longstanding consumer protections in Medicaid.
Comment Sought on Website about IDEA (Individuals with Disabilities Education Act)
The Office of Special Education and Rehabilitative Services requests public comment as it works to create a new and improved website to provide essential information and resources related to services children are entitled to under the IDEA (Individuals with Disabilities Education Act). Read more and post your comments.
Reminder: Family Survey Deadline
March 30 is the final day to complete the online Family and Individual Needs for Disability Supports (FINDS) Survey from The Arc. The survey’s goal is to capture perceptions of individuals with intellectual and developmental disabilities (I/DD) and their families on a range of life-span issues. People age 18 years or older who provide primary paid/unpaid and frequent support to a family member or friend with an I/DD are invited to complete the survey.
Report: Integrating Behavioral Health in Pediatric Primary Care
Not a single state in the US has an adequate number of child psychiatrists to treat children with mental, behavioral or developmental disorders. A new report explores the prevalence of childhood behavioral health problems; describes the need for, barriers to, and models of behavioral health integration in pediatrics; and offers policy and implementation considerations for policymakers, planners, and providers. Read the report.
Transition to Adulthood
Tips for Navigating the Move to Adult Care
A Young Person’s Guide to Health Care Transition is a report from the National Collaborative on Workforce and Disability that speaks directly to youth about moving from pediatric to adult health care. The report considers topics such as changing providers, living a healthy lifestyle, paying for health care, and managing their own health and wellness.
Project College Offers Opportunities for Youth with Developmental Disabilities
Project College is a program that offers youth ages 17-22 with developmental/intellectual disabilities an actual college experience to inspire and prepare them for postsecondary opportunities. Sponsored by United Cerebral Palsy of San Diego County. Read more and apply. Fee. Applications are due by March 31.
- The American Academy of Pediatrics (AAP) has updated Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, along with the Bright Futures Periodicity Schedule (PDF)
- Nuts & Bolts of Income Tax for Individuals with Disabilities and Their Families – from The Arc
- Affordable Care Act Toolkit for Self-Advocates – from Autistic Self Advocacy Network
- Complex Child March issue: Palliative Care and Hospice
- Disruptive Innovation in Medicaid Non-Emergency Transportation – from the Center for Health Care Strategies
Participating in Advisory Groups
Tuesday, March 21
4:30 to 5:30 p.m. Pacific Time
Sponsors: Family Voices, National Center for Family/ Professional Partnerships, and others
For youth and young adults only.
Conservadurismo y Tutela: Qué deben saber las personas con discapacidades y sus familias
Thursday, March 30
10 to 11 a.m. Pacific Time
Host: USC University Center for Excellence in Developmental Disabilities, Children's Hospital Los Angeles
This webinar will be presented entirely en español.
Read more (PDF) and register.
Breaking the Link Between Special Health Care Needs and Financial Hardship
Wednesday, March 29
9 to 10 a.m. Pacific Time
Host: Catalyst Center
Causes and consequences of financial hardship for families of children with special health care needs, and state strategies and resources to address it.
Also see: The updated resource from the Catalyst Center: Breaking the Link Between Special Health Care Needs and Financial Hardship (PDF)
Childhood Adversity: Data to Help Advocate for Change
Wednesday, March 29
10:30 to 11:30 a.m. Pacific Time
Hosts: Kidsdata.org, a program of the Lucile Packard Foundation for Children’s Health, and the California Department of Public Health
Panelists will discuss how to describe the burden of childhood adversity, and provide a virtual tour of kidsdata’s childhood adversity and resilience data, research, and policy recommendations.
Read more and register.
START National Training Institute
April 30 - May 2
Rye Brook, NY
Host: Center for START Services, a nonprofit program at University of New Hampshire/Institute on Disability
Networking and collaboration to improve practices, service outcomes, and life experiences for individuals with intellectual/developmental disability and co-occurring mental health conditions.
Learn more and register. Fee.
In the News
- Trump Budget Could Have Large Implications for Public Health
Modern Healthcare, 3/16/17
- Medicaid Was the Only Insurance That Tried to Save My Daughter
- Disabled Kids at Higher Risk of Abuse, Study Finds
- People with Autism, Intellectual Disabilities Fight Bias in Transplants
Washington Post, 3/4/17
- Poll Finds Widespread Use Of ‘Retard’
Disability Scoop, 3/2/17
- Listening in on the Brain: A 15-year Odyssey
Inside Stanford Medicine, 2/21/17
We'd like to hear from you
Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Or contact newsletter editor: Eileen Walsh at Eileen.Walsh@lpfch.org.