Posted November 16, 2017

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

Network News

Seven Foundation Grants Address Breadth of Issues

Bolstering family involvement in policymaking, improving hospital discharge planning, and developing a scorecard to compare services provided for CSHCN and their families on a state-by-state basis are the goals of grants recently awarded by the Lucile Packard Foundation for Children's Health. Newly approved grants also address monitoring implementation of California's plan to transfer children from California Children's Services into Medi-Cal managed care, measuring and improving the quality of home health care, and developing a tool for care planning for children with medical complexity. Read more about the grants.

Children with Medical Complexity

Stanford Children's: Coordinating Care around a Hub

Stanford Children's Health employs a "hub model" to encourage improved care coordination and communication for children with medical complexity. Its CORE (Coordinating and Optimizing Resources Effectively) program team liaises with a patient's family and multiple caregivers, and also among the caregivers themselves. In an unusual step, the program also works with community-based pediatric practices. The Stanford project is part of the CARE (Coordinating All Resources Effectively) program, through which the Children's Hospital Association partners with 10 hospitals around the country on projects aimed at improving outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. Read more.

Family Engagement

Family Voices Commentary: Recognize Family Resiliency, Strengths

In a special issue of Academic Pediatrics devoted to the impact of adverse childhood events, Family Voices provided an article, "Nothing About Us Without Us," suggesting that a child's disease or disability can be an adverse event that has impact on both child and family. The authors urge researchers and policymakers to include families in all stages of research and policy discussions, and to recognize the importance of family experience and resilience in mitigating the effects of adversity. Read the article (PDF).

Also see: Patient-led Advisory Councils Tackling Bigger Matters – from Modern Healthcare

Also see: Summary: Childhood Adversity and Resilience – from


Photo of Satya NadellaCEO Reflects on Lessons His Children Taught Him

In this online interview, Microsoft CEO Satya Nadella discusses how raising two children with disabilities taught him to be more empathetic, and how he believes developing empathy made him a better CEO and a better person.

National Policy

Washington, DC, and Children with Special Health Care Needs

Several actions pending in the nation's capital could have an impact on children with special health care needs and their families:

  • A five-year extension of funding for the Children's Health Insurance Program (CHIP) passed the House (H.R. 3922), and now awaits Senate action. Democrats object to tradeoffs that would cut other key programs for children, so negotiations continue. States are beginning to run out of funds to care for the 9 million covered children, many of whom have special health care needs.
  • The version of the CHIP bill that passed the House extends funding for Family to Family Health Information Centers that serve children with special health care needs and their families. It is not clear whether the extension, or proposed increased funding for centers, will be included in future iterations.
  • The proposed tax bill has passed the House, but reconciliation will be necessary in the Senate. Some proposed provisions could be concerning to families of CSHCN, including repeal of the medical expense deduction. If a bill is passed that would increase the deficit markedly, this could lead to cuts in other programs, including Medicaid, which supports care for many CSHCN.

Also see: A Confused Congress Putting Children's Health Insurance at Riskfrom Vice and Republicans' Proposed Tax Plans Will Have Devastating Consequences for People with Disabilities – from Rewire

Don't Forget - Shorter Enrollment Period for Health Insurance

See Covered California or for full information and dates.

California Policy

Senate Hearing: Achieving and Maintaining Adequate Provider Networks in Medi-Cal Managed Care

On November 9, California Senate Budget Subcommittee 3 held an oversight hearing on whether the state is able to ensure adequate provider networks in Medi-Cal managed care, which many advocates testified is a serious problem. Speakers included state officials, managed care plan representatives, providers, consumers, and advocates. Subcommittee Chair Dr. Richard Pan requested suggestions on how the state can address long delays in care for consumers and inadequate compensation for providers. Some children with special health care needs currently covered by California Children's Services will be transferred to Medi-Cal managed care next year. Watch the hearing (loading may be slow).

Also see: As Medicaid Managed Care Proliferates, So Do Complaints – from Disability Scoop


Find State-by-State Information on Developmental Disabilities Services

The American Association on Intellectual and Developmental Disabilities has released its 2017 State of the States report. The data illustrate service delivery trends in community living, public and private residential institutions, family support, supported employment, supported living, Medicaid Waivers, and demographics.

In Brief

Transitions to Adult Care

  • See videos from the Child Neurology Foundation depicting families' transition stories.


Leveraging Medicaid Quality Metrics to Improve Care for Children with Special Health Care Needs

Monday, November 27
11 a.m. to 12 p.m. Pacific Time
Sponsor: The National Academy for State Health Policy and the Lucile Packard Foundation for Children's Health
Details: Quality measurement is a critical component of all state Medicaid programs. A variety of strategies are available to states to leverage quality metrics to improve health care and quality of life for CSHCN and their families. This webinar examines the current landscape, challenges, and key strategies for states conducting quality measurement for these children.
Read about the speakers and register.

Understanding California's Regional Centers: From Yesterday to Today and Tomorrow

Wednesdsay, November 29
12 p.m. to 1 p.m. Pacific Time
Sponsor: Family Voices of California
Details: California's 21 Regional Centers serve more than 300,000 individuals with developmental disabilities and their families. This webinar will review the history of the Regional Center system, its current status, issues that will shape the future, and funding sources. The speaker will be Amy Westling, executive director of the Association of Regional Center Agencies, which represents all California regional centers.
Read more and register.

Fellowship Opportunity

Apply for Joseph P. Kennedy, Jr. Foundation Public Policy Fellowship

The Joseph P. Kennedy, Jr. Foundation is seeking professionals, persons experiencing disability, or their family members who are currently working or volunteering in the field of inclusive services and supports for people with intellectual and developmental disabilities. The fellowship is a one-year, full-time, intensive immersion experience in Washington, DC. Apply online by December 15.

Leadership Opportunity

Developing Leaders to Advance Cultural, Linguistic Competence in Disabilities Field

Applications are being accepted until December 7 for participation in the Georgetown University Leadership Academy. The Academy is designed for individuals working throughout the intellectual, developmental, and other disabilities networks who are interested in assuming leadership roles to advance and sustain cultural diversity and cultural and linguistic competence in their field. Read more and apply.

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.