Posted June 22, 2017

News, policy updates, resources, events, and advocacy opportunities

National Policy

Health Care Bill Released:
Academy of Pediatrics, Many Advocacy Groups Urge Calls to Senators NOW

The US Senate unveiled its proposed health care bill today, with the goal of bringing it to a vote next week, limiting time for debate on a bill that was developed in secrecy. The bill (PDF) could profoundly alter the services and supports that children with special health care needs receive under Medicaid and the Affordable Care Act.

There is language in the bill that exempts blind and disabled children under age 19 from the proposed Medicaid per capita caps, but this is a limited exemption. A public statement from the American Academy of Pediatrics says that "The bill includes misleading 'protections' for children by proposing to exempt them from certain Medicaid cuts. A 'carve-out' for some children determined to be 'disabled' does little to protect their coverage when the base program providing the coverage is stripped of its funding."

The Academy also is spearheading a national Day of Action, calling on all stakeholders to contact their Senators and express their concerns about the bill. Family Voices, The Arc, the National Health Law Program, Children’s Defense Fund, Children Now, the American Association of People with Disabilities, the Children’s Hospital Association, and many others also are urging immediate action.

To reach your Senators toll-free:

  • (866) 426-2631 (English)
  • (877) 736-7831 (Español)
  • Or call (202) 224-3121 to ask for your Senator by name

Also see:

Network News

Streamlined, Simplified and Updated: Standards for Systems of Care for Children with Special Health Care Needs
The Association of Maternal and Child Health Programs has just released an updated version of the 2014 national standards for improving systems of care that serve children with special health care needs. The revised standards build on the original work while streamlining the content for easier use.

The update was developed in partnership with the National Academy for State Health Policy and supported by the Lucile Packard Foundation for Children’s Health. The standards are designed to be of particular value to Medicaid programs and health plans, and to families whose children depend upon these sources of care.

Read the revised standards.

California Children’s Services

CCS Advisory Group to Meet July 11
The public may attend or listen to the upcoming quarterly meeting of the CCS Advisory Group, which represents consumer and provider viewpoints on implementation of the CCS redesign and the whole-child model. The agenda and meeting materials are not yet available but will be posted on the group’s website.

Tuesday, July 11
10 a.m. to 3 p.m. Pacific Time
1700 K Street, Sacramento - First Floor Conference Room
(888) 989-6488; Passcode (listen only): 1945234

California Policy

Recap: Report Calls for Changes in Regional Center Funding, More Equitable Purchase of Services
A recently issued study from the legal advocacy group Public Counsel highlights the minimal progress that has been made toward addressing longstanding racial and ethnic inequities in purchase of services for children with developmental disabilities served by the state's 21 Regional Centers. The report also addresses the need for change in how Regional Centers are funded. Read the recommendations in the full report. The research was funded by the Lucile Packard Foundation for Children's Health.

Also see:

Medi-Cal Children's Health Advisory Panel to Meet
Wednesday, June 28
10 a.m. to 2 p.m. Pacific Time
1700 K Street, Sacramento - First Floor Conference Room
(888) 972-9334; Passcode: 2642685
See the agenda and meeting materials on the MCHAP webpage.

Health Care Financing

Catalyst, AAP Webinar and Publication: Innovative Health Care Financing Strategies for CSHCN
The Catalyst Center and the American Academy of Pediatrics (AAP) produced a special supplement to Pediatrics on value-based purchasing (VBP) and value-based insurance design (VBID) and their potential implications for children and youth with special health care needs. Read the supplement. On June 13, Catalyst Center staff and colleagues from the AAP presented a webinar that provided an overview of VBP and VBID and their potential implications; the perspective of families on value and quality; key highlights from each of the Pediatrics supplement papers; and recommended resources. See the webinar recording, slides and recommended resources.


Study: How Are Youth in Special Education Faring?
Results from a national longitudinal study conducted by Mathematica provide a snapshot of secondary students in special education. The research looks at students’ backgrounds, functional abilities, school experiences, academic support, and preparation for life after high school. Part of the study compares students who have an Individualized Education Program (IEP) to their peers who do not have one. Another aspect of the research compares students in 12 disability groups and how they fare relative to one another. Read the findings.

Employment Opportunity

The Lucile Packard Foundation for Children's Health is recruiting for a Program Associate, primarily for assisting in grant-related activities aimed at improving systems of care for children with chronic and complex health conditions. Responsibilities will include assisting with editing the Network Newsletter. Read more.


New Exhibit Highlights Works by Artists with Developmental Disabilities
The California Museum has just opened a new exhibit, Art and Advocacy, featuring original works by developmentally disabled artists from across California. The exhibit marks the 40th anniversary of the Lanterman Act, the 1977 law giving developmentally disabled Californians the right to services and supports. The exhibit, which seeks to challenge assumptions about individuals with developmental disabilities, runs through September 17. Read more.


The Home- and Community-Based Services (HCBS) Quality Framework Development
Wednesday, June 28
11 a.m. to 12 p.m. Pacific Time
Sponsor: Administration for Community Living
Second in a webinar series that provides a platform for stakeholders to share developments and collaborate on efforts concerning the quality of home- and community-based services. This webinar will focus on quality framework development.
Read more and register.

In the News

We'd like to hear from you

Let us know what's happening with your organization or family. Email newsletter editor Eileen Walsh at eileen.walsh [at] with your news or updates.