CA Advocacy Network for Children with Special Health Care Needs Survey

Question Title

1. What is your primary role in the system of care for children with special health care needs?

Family member of a child or youth with special health care needs

Youth with a special health care need

Non-profit/human services agency

Physician

Health care service provider (non physician)

Educator or public school staff member

County or state health agency employee

Health insurance company or health care organization employee

Employer/insurance purchaser

City, county, state, federal, policymaker/legislator

Health policy researcher

Other (please specify)

Question Title

2. Network members identified the following issues for children with special health care needs. Please select one for the Network to address:

Advancing patient/family-centered care

Expanding the California Children's Services (CCS) program to care for the whole child, not just specialty care services

Improving care transition from pediatric to adult medicine providers

Improving the coordination of care for children with special health care needs

Updating the eligibility criteria for the California Children's Services (CCS) program

Reducing racial, ethnic and language barriers to care

Other (please specify)

Question Title

3. Considering the issue you selected in question 2, which strategy would be most effective? (Choose one)

Providing testimony to committees and policymakers

Participating in data gathering efforts

Educating policymakers about families of children with special health care needs

Providing tools and training for members interested in joining advisory committees (hospital commissions/boards, state commissions, health plans)

Identifying best practices for replication (in health plans, counties, other states, etc)

Monitoring system performance

Other (please specify)

Question Title

4. The Lucile Packard Foundation for Children's Health wants to support health care advocacy efforts for children and their families. Which Foundation activity would be most helpful? (Choose one)

Supporting issue specific work groups (i.e., care coordination, rural health, etc)

Convening state-wide annual meetings

Organizing Network legislative days in Sacramento

Facilitating regional meetings for stakeholders

Sponsoring information-sharing meetings between counties

Other (please specify)

Question Title

5. What additional activity should the Foundation support to increase the effectiveness of advocates? (Choose one)

Legislative advocacy training for families and professionals

Training for families to participate in all levels of decision making within the system of care

Health professional education to improve family-centered care

Research strategies to improve financing health care for children with special health care needs

Health literacy support for families

Other (please specify)

Question Title

6. Network members already receive information about children with special health care needs. What type of additional communication would be most useful to you? (Choose one)

Web-based information such as blog entries

Email legislative action alerts

Weekly email digest/newsletter containing research, news, upcoming events, etc

Monthly newsletter email on important topics (e.g, care coordination, rural health, financing, etc)

Nothing more needed

Other (please specify)

Question Title

1. What is your primary role in the system of care for children with special health care needs?

Question Title

2. Network members identified the following issues for children with special health care needs. Please select one for the Network to address:

Question Title

3. Considering the issue you selected in question 2, which strategy would be most effective? (Choose one)

Question Title

4. The Lucile Packard Foundation for Children's Health wants to support health care advocacy efforts for children and their families. Which Foundation activity would be most helpful? (Choose one)

Question Title

5. What additional activity should the Foundation support to increase the effectiveness of advocates? (Choose one)

Question Title

6. Network members already receive information about children with special health care needs. What type of additional communication would be most useful to you? (Choose one)

Question Title

7. What additional suggestions do you have for the Foundation to support advocacy for children with special health care needs?