Standards for Systems of Care for Children and Youth with Special Health Care Needs

National Standards for Systems of Care for CYSHCN: IN-DEPTH State Systems Assessment Tool for Community-Based Services and Supports

System Principles, Standards and Key Questions for Assessment of State Systems of Care for CYSHCN DOMAIN: COMMUNITY-BASED SERVICES AND SUPPORT

CYSHCN and their families are provided access to comprehensive and community-based supports, provided by their health plan and/or in partnership with other community agencies including family organizations, public health, education, Early Intervention (Part C), Special Education welfare, mental health, and home health care organizations.

State: ______Date: ______

Type of Agency Completing this Tool:  Title V State Medicaid  CHIP Health Plan/Insurer

Provider (please specify ______) Family/Consumer Other (please specify: ______)

When providing answers in this assessment tool, please do so from the perspective of the organization or system in which you work or are affiliated.

Column A Column B Column C Column D System Standards Within my organization, there are What agencies/entities in your Please rate your organization’s (Structure and Process) policies and procedures in place for state have the authority to authority to implement or improve this standard: implement and/or ensure this policies and procedures that support standard? (Check all that this standard. apply.) 1. Agreements are in place  Yes  Title V 0 None 1 Weak between the health systems and (IF YES) How effective are those  State Medicaid various community agencies policies and procedures? 2 Moderate  CHIP and programs serving CYSHCN 1 Not effective 3 Strong and are structured to: 2 Somewhat effective  Health Plan/Insurer o promote family 3 Very effective  Provider (please specify) support through linking families to family  Family/Consumer organizations and other OPTIONAL: services and supports  Other (please specify) Why?  No (Select “0” for score, above ) promote shared o  Not applicable to my organization financing

o establish systems for timely communications and appropriate data sharing

o ensure access and

1 National Standards for Systems of Care for CYSHCN: IN-DEPTH State Systems Assessment Tool

coordination of services for individual children and their families

o promote collaboration between community-based organizations and agencies, providers, health care systems, and families

o specify responsibilities across the Enter Score: various providers, and Enter Score: community-based agencies serving children and their families1 RESPITE CARE (as part of the community based services)

1. Respite services, both planned  Yes  Title V 0 None 1 Weak and emergency, are available to (IF YES) How effective are those  State Medicaid all families and caregivers of policies and procedures? 2 Moderate  CHIP CYSHCN. 1 Not effective 3 Strong 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

 Family/Consumer OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above )  Not applicable to my organization

Enter Score: Enter Score:

2 National Standards for Systems of Care for CYSHCN: IN-DEPTH State Systems Assessment Tool for Community-Based Services and Supports

2. Families are informed about  Yes  Title V 0 None 1 Weak available respite services and (IF YES) How effective are those  State Medicaid helped to access them. policies and procedures? 2 Moderate  CHIP 1 Not effective 3 Strong 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

Enter Score: Enter Score: 3. When out-of-home respite  Yes  Title V 0 None 1 Weak services are needed, (IF YES) How effective are those  State Medicaid transportation is available to policies and procedures? 2 Moderate  CHIP help a child and family access 1 Not effective 3 Strong these services. 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

4. Health providers and plans  Yes  Title V 0 None 1 Weak screen families and caregivers (IF YES) How effective are those  State Medicaid of CYSHCN for respite care policies and procedures? 2 Moderate  CHIP needs, make them aware of 1 Not effective 3 Strong available respite services in their 2 Somewhat effective  Health Plan/Insurer community, and provide them 3 Very effective  Provider (please specify) with appropriate and timely referrals to providers that are  Family/Consumer qualified to serve CYSHCN. OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above)  Not applicable to my organization

Enter Score: Enter Score: 5. Health providers and plans have  Yes  Title V 0 None 1 Weak a system in place for ensuring (IF YES) How effective are those  State Medicaid timely referrals for families of policies and procedures? 2 Moderate  CHIP CYSHCN with emergency respite 1 Not effective 3 Strong needs. 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

 Family/Consumer OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above)  Not applicable to my organization

PALLIATIVE AND HOSPICE CARE (as part of the community based services) 1. Curative and palliative care (also  Yes  Title V 0 None 1 Weak known as concurrent care) is (IF YES) How effective are those  State Medicaid available and offered at the policies and procedures? 2 Moderate  CHIP same time. 1 Not effective 3 Strong 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

 Family/Consumer OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above)  Not applicable to my organization

Enter Score: Enter Score: 5 National Standards for Systems of Care for CYSHCN: IN-DEPTH State Systems Assessment Tool

2. Palliative and hospice care  Yes  Title V 0 None 1 Weak utilizes family-centered models (IF YES) How effective are those  State Medicaid of care that respect individual’s policies and procedures? 2 Moderate  CHIP preferences, value, and cultural 1 Not effective 3 Strong beliefs, and provide family 2 Somewhat effective  Health Plan/Insurer access to psychosocial 3 Very effective  Provider (please specify) screening and referrals to needed supports and services.  Family/Consumer OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above )  Not applicable to my organization

Enter Score: Enter Score: 3. The child and family plays an  Yes  Title V 0 None 1 Weak active role in decision making (IF YES) How effective are those  State Medicaid regarding goals and plans of policies and procedures? 2 Moderate  CHIP care. 1 Not effective 3 Strong 2 Somewhat effective  Health Plan/Insurer 3 Very effective  Provider (please specify)

Enter Score: Enter Score: HOME-BASED SERVICES (as part of the community based services)

1. Home health care is a covered  Yes  Title V 0 None 1 Weak benefit for CYSHCN that (IF YES) How effective are those  State Medicaid includes health care for the child policies and procedures? 2 Moderate  CHIP and supportive care for the 1 Not effective 3 Strong family, and is provided in the 2 Somewhat effective  Health Plan/Insurer family's home by licensed 3 Very effective  Provider (please specify) professionals who have experience in pediatric care.2  Family/Consumer OPTIONAL:  Other (please specify) Why?  No (Select “0” for score, above )  Not applicable to my organization

Enter Score: Enter Score: Effectiveness Indicator: Organizational Influence Indicator: SUMMARY: COMMUNITY-BASED SERVICES AND SUPPORT

Additional Notes:

ENDNOTES:

8 1 See framework presented by Richard C. Antonelli (2012). “Integration for Children with Special Health Needs: Improving Outcomes and Managing Costs.”Presentation for the National Governors Association, July 12, 2012. Unpublished.

2Libby RC, Imaizumi SO. American Academy of Pediatrics, Committee on Child Health Financing, Section on Home Care. Policy Statement: Financing of Pediatric Home Health Care (Second Edition). Available at: http://pediatrics.aappublications.org/content/118/2/834.full.pdf. Updated 2009. Accessed October 2013.