Posted September 7, 2017

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

Network News

Report: Improving Access to Mental Health Services for Children with Special Health Care Needs
A just-released study from the National Health Law Program (NHeLP) offers short- medium- and long-term recommendations on how to improve access to mental health services for children with special health care needs in California. The report, based on a survey, identified mental health as one of the most difficult services to obtain. The report outlines the legal requirements for providing care, and highlights the roadblocks for families. The research was funded by the Lucile Packard Foundation for Children’s Health. Read more

Care Coordination

An Experiment in Co-Management of Pediatric Primary and Subspecialty Care
In an effort to make health care more accessible, affordable, and efficient, Connecticut Children’s Medical Center in 2009 launched a project in which pediatric primary care providers work collaboratively with subspecialty providers to diagnose and treat patients. Primary care pediatricians refer patients to specialists only when their care cannot be managed, using guidelines jointly developed by primary and specialty care providers. Over the years the project expanded to cover numerous diagnoses. Co-management now is seen as a promising strategy to control costs and address system improvement. Read an issue brief about the project

Project Reduces Hospital Admissions for Complex Conditions, Increases Family Satisfaction
The Children's Hospital Association partners with 10 hospitals around the country on the CARE (Coordinating All Resources Effectively) program, aimed at improving outcomes and reducing costs of care for children with complex medical conditions enrolled in Medicaid. An update from Children’s Hospital of Philadelphia reports on its successful work to reduce admissions, emergency department visits, and length of stay by strengthening care coordination. The report offers advice on how other institutions can initiate or improve programs for children with medical complexity. Read the update.

California Children's Services

Medi-Cal Children’s Health Advisory Panel (MCHAP) to Meet; CCS on Agenda
Tuesday, September 12
10 a.m. to 2 p.m. Pacific Time
1414 K Street, Sacramento, First Floor Conference Room
Dial-in: 888-972-9334; Passcode: 2642685
Transition planning within California Children’s Services is one agenda item. See the full agenda and a summary of the June 28 meeting on the website.

Also see: The Senate has passed SB 220, which revises the qualification criteria for membership on the MCHAP, which is an independent board that advises the Department of Health Care Services on issues relevant to children enrolled in Medi-Cal and their families.

California Policy

Restrictions on Respite Care Provided by Regional Centers to End January 1
Under current California policy, Regional Centers are limited to purchasing no more than 90 hours per quarter of in-home respite care and 21 days of out-of-home care for a family, unless an exemption is granted. Effective January 1, 2018, these limits on the purchase of respite services will no longer apply. In an August 3 letter to executive directors, the Department of Developmental Services requests that Regional Centers conduct outreach and work with families, providers, and local community organizations to publicize repeal of these restrictions. Read the letter (PDF).

Information Sought on Children Not Receiving Needed, Approved In-Home Nursing Care
Disability Rights California is interested in talking to families who are authorized for in-home nursing or private duty nursing, but who cannot find nurses. Call 888-852-9241. Read this related article on an investigation by NBC News Bay Area: In-Home Nursing Care Still Lacking for Sick Kids.

National Policy

Congress to Weigh Decisions on Key Health Programs
The US Congress faces a myriad of issues as it comes back into session this week, many of which could affect children with special health care needs: the budget bill, cost sharing under the Affordable Care Act, funding for the Children’s Health Insurance Program (CHIP), and more. Repealing and replacing the Affordable Care Act may remain in play. A new report from The Commonwealth Fund notes that there may be A Glimmer of Bipartisanship on the ACA and Politico reports that Trump Wants One Last Senate Push on Obamacare Repeal.

Also see: Medicaid and CHIP: Essential Investments in Children and find your senators to make your views known. 

Bill to Watch: HR 620. The Americans with Disabilities (ADA) Education and Reform Act of 2017. Strongly opposed by disabilities advocacy groups for weakening ADA protections. 

Family Engagement

Families Take the Lead in Policy, Programs
Family Voices of California, with support from the Lucile Packard Foundation for Children’s Health, in 2013 created the Project Leadership program, which offers training to prepare family members of children with special health care needs to advocate for policy and service improvements. Read about the accomplishments of program graduates here.


Stanford Study: Infants’ Race Influences Quality of Neonatal Intensive Care in California
Asian American and white infants received the highest overall quality of care Neonatal Intensive Care Units (NICUs) in California, based on a scoring system developed by Stanford School of Medicine researchers. Their study, published in Pediatrics, analyzed care for nearly 18,000 infants in 134 NICUs across the state. The research is the first attempt to look at disparities in care across several dimensions of neonatal care at the same time. Read more.



Strategies for Success: What Parents Need to Know About Quality Inclusion for All Children
Thursday, September 14
9 a.m. to 10 a.m. Pacific Time
Host: SPAN START Project
Speakers will provide parents and caregivers an overview of best practices in supporting the inclusion of students with disabilities in general education programs to improve student outcomes.
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.