Posted August 4, 2016
A newsletter to inform advocates for children with special health care needs about current issues and upcoming opportunities to express their opinions to policymakers and program administrators.
Please forward the newsletter and encourage your colleagues and constituents to join the Network.
CALIFORNIA CHILDREN'S SERVICES
Appropriations Committee Schedules Hearing on CCS Bill
The Assembly Appropriations Committee has scheduled a hearing for August 10 on Senate Bill 586, which addresses the future of the California Children's Services (CCS) program and the state's proposed plans to move some children covered by CCS into managed care. The current version of the bill contains language supported by advocacy groups to address issues of concern in the state’s proposed whole-child model (PDF) of care. For updates on the hearing date and agenda, check the Committee webpage by clicking on Appropriations in the list of Assembly Committees, then clicking on Hearings (webpage intermittently under maintenance).
Listen to the hearing.
Also see recorded webinar: Family Protections and Continuity of Care in the New CCS Whole-Child Model – Sponsored by Family Voices of California
Reminder: Letters of Intent Due August 12 for System Change Grants
The Lucile Packard Foundation for Children's Health is seeking applications for grants to develop issue briefs that describe goals and processes to improve aspects of the system of care for children with chronic and complex health conditions. The briefs must provide specific, scalable recommendations for action related to practice, research, programs, and policy. Letters of Intent are due August 12, and proposals are due September 15. Learn more.
Webinar on Care Coordination and Social Complexity Now Online
In this July 27 webinar, two experts discussed their research and clinical experiences with children who have special health care needs and whose lives are complicated by factors such as poverty, poor parental health, and abuse and neglect. View the recording.
Also see: August 9 Webinar: Looking Outside Hospital Walls: Care Coordination for Children with Medical Complexity – Children's Hospital Association
Transforming Complex Care – Center for Health Care Strategies
Survey Sheds Light on Family Engagement in Programs for CSHCN
Family involvement in planning, development, and evaluation of programs and policies is essential to a well-functioning system of care for children with complex conditions. In 2014 and 2015, the Association of Maternal and Child Health Programs conducted a survey of directors of federally funded Title V programs to gauge the range, depth, and effectiveness of family engagement in their programs. See the findings and recommendations.
- Grieving California Mother Fights for Unemployment Rights for Family Caregivers
SJ Mercury, 7/31/16
- New Voices in Medical Advocacy Often Are Patients
Wall Street Journal, 7/25/16
'Intense Parenting' Study Documents Experience of Parents of Children with Special Needs
Parents of children with special health care needs lack adequate services and supports necessary to meet the many demands they face, according to a new report from Canada that details the experiences of 68 parents. As growing numbers of parents care for their children with complex needs at home, it becomes increasingly important to understand their evolving roles and challenges in order to support them, the report says. Read more.
A 'Victory' for Children: Medicaid Coverage of Maternal Depression Screening
Under a new federal ruling Medicaid agencies have the option to cover maternal depression screening as part of a well-child visit. Maternal depression can have a severe effect on child development. The ruling gives state Medicaid agencies discretion in determining the payment approaches for the screening. Read more.
Department of Developmental Services to Address Disparities in Purchasing of Services
The Department of Developmental Services has scheduled four public meetings to review purchase-of-service data with stakeholders around the state. Discussion topics will include cultural barriers in obtaining Regional Center services, areas of the developmental disabilities service system that need clarification for stakeholders, and recommendations to promote equity in the purchase of services. Read more and find meeting dates and locations (PDF).
Department of Health Care Services Stakeholder Advisory Committee to Meet
Thursday, August 11
9:30 a.m. to 1:30 p.m.
Sacramento Convention Center, 1400 J Street, Room 313
Call-in: 1-888-989-9730, code 6881144. Listen only. Public comment will be taken at the end.
Low-Interest Loans for Assistive Technology Available to Californians
The FreedomTech Financial Loan Program provides low-interest loans between $500 and $15,000 for purchase of devices or products to assist a person living with a disability. The program was established with funding from the U.S. Department of Education, Rehabilitation Services Administration.
Other useful resources
- Complex Child August edition: Advocacy
- Transportation: Aging & Disability – the National Aging and Disability Transportation Center
Reminder: Congreso Familiar on Saturday, August 6
Medicaid/CHIP Managed Care Regulations: Network Adequacy and Access to Services
Friday, August 5
10:30 to 11:30 a.m. Pacific Time
Sponsored by the Georgetown University Center for Children and Families (CCF) and the National Health Law Program (NHeLP)
Review of the network adequacy and access provisions of the Medicaid and Children's Health Insurance Program (CHIP) Managed Care regulations, released in May 2016.
Read more and register for the webinar.
CSHCN IN THE NEWS
- New State Initiative Could Help All Foster Parents (features a child with special health care needs)
California Report, 8/2/16
- Suzanne Wright, a Founder of Autism Speaks, Dies at 69
NY Times, 8/1/16
- Study: 30 Percent of Children's Readmissions to Hospitals May Be Preventable
Kaiser Health News, 7/29/16
- Even with Insurance, Family of Medically Fragile Child Struggles to Find Home Health Care
- In First, Insurer to Offer ABA Coverage Nationwide
Disability Scoop, 7/22/16
- Helping a Child Manage a Chronic Illness
WE'D LIKE TO HEAR FROM YOU
Let us know what's happening with your organization or family. Email Program Associate Danielle DeCosta at Danielle.DeCosta@lpfch.org with your news or updates. Newsletter Editor: Eileen Walsh