March 2009—Family Voices of California represents more than 20,000 families of children and youth with special health care needs (CYSHCN) from across the state. We thank you for ensuring that some of the more significant cuts proposed by the Governor affecting CYSHCN were not included in the 2009-2010 California budget.

Family Voices of California urges you to work to protect the safety net for children with special health care needs:

• Regional Centers are cost effective ways to keep CYSHCN at home with their families and individuals living in the community; additional cuts to Regional Centers should be those proposed by the DDS Budget Workgroup so as not to negatively impact the health of CYSHCN.
  
  
• MediCal: cuts means less access to critical services for children who are already medically fragile.
  
  
• Restore local California Children’s Services (CCS) funding (cuts per county averaging 17%, but at high as 58% ): layoffs of nurses, social workers, therapists will drastically reduce CYSHCN’s access to essential health services.
• Protect IHSS workers’ pay. By reducing their pay, our ability to access care for our children will be seriously compromised.
  
  
• Upcoming Proposition 1D re-directs $1.6 billion over 5 years from state and county First 5 Commissions to the state budget, threatening children at greatest risk by reducing funds for local health care, developmental screening and treatment, dental care, child safety programs, obesity prevention, quality child care, preschool and support for families.  Eliminating prevention and early intervention programs will contribute to costly long-term problems, worsening future budgets.
  
  
• Fully utilize every available method to access additional federal money. This will help to prevent additional severe cuts to the Regional Center, health and human services, and MediCal.
  
  
• Protect CYSHCN in upcoming budget negotiations. Please do not make additional cuts affecting our ability to care for our children.
  
  

Basic Principles in Approaching Health Care Reform for
Children with Special Health Care Needs

The primary principle in approaching current or future health care reform plans proposed this year is that they first do no harm-- i.e. no proposal should reduce or impede the access to appropriate pediatric health care that children with special health care needs currently have.  At the same time, the health care reform efforts also provide opportunities to address existing problems of access to care, low reimbursement rates for providers, and other financial and systemic barriers to medically necessary care.

In California the Medi-Cal and CCS programs are the most comprehensive health care programs available to children with special health care needs and access to these programs must be protected for these children.  In order to achieve this overarching goal, we recommend that all health care reform proposals meet the following basic principles:

 (1)  Proposals must maintain or improve existing income eligibility levels for children’s access to Medi-Cal:

1. Proposals should ensure that, at minimum, Medi-Cal continues to cover all currently eligible income levels based on percentage of Federal Poverty Level.
2. Proposals should maintain access to Medi-Cal for all special populations that currently are eligible, including but not limited to enrollees institutionally deemed under waiver programs.
3. Proposals should ensure that earned income disregards for the purposes of Aged/Blind/Disabled-linked Medi-Cal eligibility continue to be treated as they currently are and that, at minimum, income eligibility levels are maintained at current levels for children with ABD-linked Medi-Cal coverage. 

(2)   Proposals must maintain or improve on the existing benefit structure and guarantee for children’s access to health services under Medi-Cal:

1. Proposals should ensure that current federal requirements for the Early Periodic Screening Diagnostic Treatment (EPSDT) benefit remain in place.
2. Proposals should at a minimum maintain the current benefit structure and package for all Medi-Cal children.  A tiered benefit structure for Medi-Cal children that would limit or reduce services is not acceptable.

(3)  Proposals should ensure that children maintain their access to pediatric and safety net providers, including regionalized pediatric health care systems for neonatal, pediatric intensive, and other pediatric care; pediatric sub-specialties; child-appropriate durable medical equipment and other supply vendors; and other pediatric-appropriate services.  

(4)  Providers serving children with special health care needs must continue to meet established CCS standards for credentialing that reflect pediatric training and experience.

(5)  Proposals should ensure that the CCS carve-out remains intact.  Proposals also should address the need to update income eligibility for the program beyond the current income ceiling, set in 1982, in order to ensure that underinsured and uninsured children obtain access to necessary and often life-saving pediatric specialty care.

We look forward to a discussion with policymakers on how we can augment California's existing health care systems for children with special health care needs. 

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