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NETWORK NEWS

Network Member Dr. Mary Doyle
As associate medical director of Los Angeles County’s California Children’s Services program, Dr. Mary Doyle has a caseload nearly big enough to fill Dodger Stadium. Learn more about her work.
 

Wading Through a Complicated System
Network member Juno Duenas, executive director of Support for Families of Children with Disabilities, is quoted in this public radio story about one family’s experiences in obtaining services for their child with special needs through California’s complex system of care.


CALIFORNIA POLICY

Special Education Up for Review
The state has formed a Task Force on Special Education that is charged with examining all facets of educating students with disabilities and making recommendations for policy and legislative changes to improve the state’s complex system. The work will be funded by the Schwab and Stuart foundations and other philanthropies. Read more.  

State Issues Order to Insurance Companies Regarding Therapies
In response to consumer complaints, the Department of Managed Health Care on Nov. 18 issued a cease-and-desist order to three large insurers for allegedly denying medically necessary therapies, including speech and occupational therapy, which are important for many children with special health care needs. The companies each issued statements saying they are reviewing the order. Read more.  


NATIONAL POLICY

An Advocacy Opportunity: End the Sequester
The Association of Maternal and Child Health Programs (AMCHP) has joined a coalition of child health advocacy organizations, including the March of Dimes and the American Academy of Pediatrics, requesting an end to the sequester, noting its negative effects on infants, children and women. If you are interested in participating, AMCHP suggests contacting the Congressional Budget Conference Committee members. AMCHP also has a survey about the sequester and its impact on children’s health.

Ratification of Convention of the Rights of Persons with Disabilities Back on Agenda
More than 700 organizations are urging the U.S. Senate to ratify the treaty known as the Convention of the Rights of Persons with Disabilities (CRPD). Inspired by the American with Disabilities Act, the CRPD provides a framework for creating legislation and policies around the world that support the rights and dignity of all people with disabilities. The U.S. signed the treaty in 2009, but it has never been ratified. In December 2012, the Senate fell five votes short. Another hearing is proceeding today, Nov. 21. Read more.


RESOURCES

Family Voices Launches Project IMPACT
With funding from the Maternal and Child Health Bureau, Family Voices has launched the Project IMPACT website, with the goal of supporting the health and wellness of all children and youth, including those with special health care needs, and their families. The site offers news, resources, materials and tools.

Georgetown Provides Resource on Caring for CSHCN
The Maternal and Child Health Library at Georgetown University houses a “knowledge path” on caring for children and youth with special health care needs. The library offers a selection of resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. The knowledge path is designed for health professionals, program administrators, policymakers, and researchers, and includes links to resources for families.

Funding Loss Forces Closing of National Resource for CSHCN
The National Dissemination Center for Children with Disabilities (NICHCY) has closed after more than 20 years, due to a loss of funding from the Department of Education. However, the resources on the organization’s website will be available until September 30, 2014. NICHCY offered information on disabilities in children and youth; programs and services for children with disabilities; and the Individuals with Disabilities Education Act (IDEA).  


AFFORDABLE CARE ACT IMPLEMENTATION

  • California still is considering how to handle President Obama’s decision on canceled health insurance policies. Peter Lee, executive director of Covered California said a decision on allowing current plans to be renewed is coming soon. Covered California also has issued a report on its first year of operation.
  • The Kaiser Family Foundation has created a resource to help Spanish speakers navigate the Affordable Care Act.
  • U.S. Immigration and Customs Enforcement has issued a policy statement indicating that it will not use information provided for the purpose of determining eligibility for health coverage under the ACA to pursue civil immigration enforcement actions. Also, the National Immigration Law Center provides information about ACA and mixed-status families.
  • The state currently offers only stand-alone dental coverage in plans under Covered California. Advocates are concerned that this may limit access.
  • The Center on Budget and Policy Priorities is offering a webinar series to prepare advocates and state and local officials to help consumers access the Affordable Care Act’s new health coverage opportunities.

RESEARCH

Development of a Hospital-Based Care Coordination Program for CSHCN
The American Academy of Pediatrics has published a policy statement outlining Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations. The guidelines and recommendations are designed to ensure that health care teams are appropriately resourced, trained, and positioned to provide excellent care. A related survey of children’s hospitals nationwide found that palliative care programs are increasing in numbers at hospitals, but with marked variations in how they are funded and staffed.

Demonstration Project Links Child Health Quality to Health Care Reform
In 2010, the Centers for Medicare & Medicaid Services (CMS) awarded 10 grants to improve health care quality and delivery systems for children enrolled in Medicaid and the Children's Health Insurance Program (CHIP). An update on the project highlights how the grants offer an opportunity for advocates to take advantage of health care reform to link child health quality issues to state and federal policies.


GRANTS

Innovation Fund for Oral Health Seeks Concept Papers on Addressing Barriers
Through its Innovation Fund for Oral Health, the DentaQuest Foundation supports programs that create movement toward the realization of optimal oral health systems. Priority is given to projects that focus on specific communities. Concept papers accepted on a rolling basis.


IN THE NEWS
WEBINAR

The recording of a webinar on Measuring the Return on Investment in Maternal and Child Health Programs is now available from the Health Resources and Services Administration.


WE'D LIKE TO HEAR FROM YOU
Let us know what's happening with your organization or family. E-mail Network Manager Janis Connallon at Janis.Connallon@lpfch.org with your news or updates. Newsletter Editor: Eileen Walsh