Posted March 2, 2017

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

Network News

Two Foundation Grants Target Care Coordination
Improving care coordination for children with special health care needs and their families is the goal of two grants awarded March 1 by the Lucile Packard Foundation for Children’s Health. Researchers from Children’s Hospital of Buffalo will design a family-centered system of care coordination for children with medical complexity, and Health Management Associates will examine states that have made progress toward inter-agency collaboration. Read more

Family Engagement

Families Flock to Capitol for Health Summit
Families from around California gathered in Sacramento on February 27-28 for the 15th Annual Family Voices of California Health Summit and Legislative Day. Presenters at the Summit included elected officials, community and agency leaders, and parent advocates. On Legislative Day, families and their children fanned out through the Capitol to visit legislators' offices and make the case for needed changes in the health care system. Read more

National Policy

Commentary: Why the Proposed Medicaid Block Grants or Per Capita Caps Matter for Families of CSHCN
Nearly half of children with special health care needs rely on Medicaid. Edwin Park of the Center on Budget and Policy Priorities provides an analysis of the consequences of changing Medicaid to a block grant or a per capita cap program. Read more.
Also see:

California Children’s Services

Performance Measures Technical Workgroup Meets
The Department of Health Care Services’ technical workgroup, whose goal is “to align and standardize performance measures for Children and Youth with Special Health Care Needs (CYSHCN) across the California Children’s Services (CCS) Program,” met by webinar on February 21. See the webinar materials, which include an agenda and slides as well as a performance measures matrix and a performance evaluation criteria matrix. For more information, see the CCS Advisory Group webpage.

California Policy

Comment on Final Rule for Home and Community-Based Services
California is required to comply with a federal Final Rule regarding Home and Community-Based Services (HCBS), which applies to locations where individuals with developmental or intellectual disabilities live or receive services. The rule addresses topics such as maximizing individual choice, privacy, and integration with individuals who do not have disabilities. The Department of Developmental Services has released a fact sheet (PDF) regarding the state’s compliance plan. The state has until March 2019 to help providers comply with the Final Rule. Consumers may send comments about the rule to


Medicaid Waivers Targeting Children with Autism Reduce Need for Parents to Stop Working
Medicaid waivers that improve access to home and community-based services for children with autism also help their parents keep their jobs, according to research from Penn State College of Medicine and collaborators.

Complex Care

Strengthening Workforce for Complex Care
An emerging opportunity for improving care of patients with medical complexity is strengthening and expanding the trained workforce. The Center for Health Care Strategies reports on demonstration projects around the country that are testing innovative strategies for workforce enhancement, including adjusting hiring practices and investing in staff wellness. Athough the pilots focus on adults, the findings may be of interest for pediatric care. Read more about the pilots.


  • MyHealth Passport is a customized, wallet-size card, developed at The Hospital for Sick Children in Toronto, that provides instant access to medical information. It can be used when a patient goes to a new doctor, visits an emergency room, or wants to keep track of medications.
  • Improving health equity and providing culturally and linguistically appropriate services, including for people with disabilities, is the topic of a new toolkit (PDF) from the Centers for Medicare and Medicaid Services. 


Disability Policy Seminar
March 20-22
Renaissance Washington, DC Downtown Hotel
Sponsors: Multiple sponsors, including the Association of University Centers on Disabilities
An opportunity to cultivate champions on Capitol Hill and advance the grassroots movement for people with intellectual and developmental disabilities.
Learn more and register.

10th Annual Developmental Disabilities Public Policy Conference
March 26-28
Holiday Inn Capitol Plaza Hotel, Sacramento, CA
Hosts: The Arc and United Cerebral Palsy California
Learn about current state policies affecting the Intellectual/Developmental Disabilities community. Advocates visit their representatives in the California Assembly and Senate.
Learn more and register.

8th Annual Help Me Grow National Forum
April 24-26
St. Paul, MN
Panels and breakout sessions about family engagement in a Help Me Grow system, inter-agency collaboration, and clinical quality projects to improve screening and referrals in early childhood.
Learn more and register.
Also seeU.S. Departments of Education and Health and Human Services Encourage States to Adopt an Early Childhood System Model, like Children's Hospital of Orange County's Help Me Grow


Family Strengthening & Support: Experiences from Family Resource Centers Network of California
Wednesday, March 8
9:30 to 10:30 a.m. Pacific Time
Sponsor: National Family Support Network
The Family Resource Centers Network of California (FRCNCA) will share experiences in implementing nationally adopted quality standards for family strengthening and support. FRCNCA supports families of children with disabilities, special health care needs, and those at risk. The standards address how managers, direct service staff, and families can work together to develop and sustain quality programs.
Read more and register.

Being the Difference in Difficult and Shifting Times: Is It Lobbying? Is It Not?
Thursday, March 16
12 to 1 p.m. Pacific Time
Sponsor: National Parent Leadership, Advocacy, and Community Empowerment (PLACE)

Archived Webinars

  • Protecting Health Care, Medicaid, SSI and More: View the recording (registration required) and presentation slides (PDF) – The Arc 

In the News

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Let us know what's happening with your organization or family. Email newsletter associate editor Danielle DeCosta at with your news or updates. Or contact newsletter editor: Eileen Walsh at

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