National Center On the Ease of Use of Community Based Services Reducing Health Disparities for Latino Children with Special Health Care Needs Funded by the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA) and the National Institute on Disability Rehabilitation and Research (NIDRR), U.S. Department of Education AMCHP Washington, DC February 11, 2013

1. Determine barriers to community based care among CYSHCN from Latino backgrounds with a particular emphasis on primary care and specialty services 2. Identify priority areas for innovation in assuring that CYSHCN from Latino backgrounds receive community based services in a Medical Home 3. Hold a stakeholder meeting and produce a report for national dissemination on community based services for CYSHCN from Latino backgrounds Program Objectives

The Center advances policy and practice solutions that improve the ease of use of community based services for families with a child with special health care needs Funded by the Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA) National Center on the Ease of Use of Community Based Services Communitybasedservices.org

Growing population Concern of AMCHP, FAMILY VOICES, PACER & AAP Availability of data Significant disparities Why focus on Latino population?

Growth of Latino Population

Ease of Use Measurement In , Indicator 5 measurement During the past 12 months did you have any difficulties or delays getting services for [child] because… 1. …[he/she] was not eligible for the services? 2. …the services needed were not available in your area? 3. …there were waiting lists, backlogs? 4. …of issues related to cost? 5. …you had trouble getting the information you needed? 6. Difficulties or delays for any other reason? 7. During the past 12 months, how often have you been frustrated in your efforts to get services for [S.C.]? 59% of Hispanic families found services easy to use versus 68% of non-Hispanic White

Medical Home

75 % Hispanic CSHCN from Spanish speaking households DID NOT HAVE a medical home Medical Home/Hogar Médico

75 % Hispanic CSHCN from Spanish speaking households DID NOT HAVE a medical home 63% of Hispanic CYSCHN from English speaking households DID NOT HAVE a medical home Medical Home/Hogar Médico

49% Hispanic CSHCN that DID NOT HAVE a medical home, reported community based services were not easy to use Importance of Medical Home/Hogar Médico

Determination of Needs Can we identify systematic barriers to care for Latino CSHCN that are amenable to policy intervention? –At the federal level –State/local level –Clinical level

Process for Development, Review and Dissemination of White Paper Focus Groups and Action Learning Collaborative Review of policies likely to facilitate or cause barriers for CYSHCN from Latino backgrounds Pediatrician Interviews

Focus Groups In association with PACER Carried out 3 Focus Groups in Spanish 2 in Bloomington, 1 in South St. Paul

Family and Community Input Impediments to services: Eligibility Service availability Costs Lack of information Back logs, delays, interruption of care, high turnover of bilingual/bicultural providers Not being listened to Value of community-based supports Importance of medical home principles

ACTION LEARNING COLLABORATIVE Rhode Island New Hampshire New Mexico Indiana North Carolina and Oregon (Mentor States)

Review of Limited English Proficiency Provisions 13 States Reimbursing for LEP services under Medicaid/CHIP (2009) 28 States have made at least minimal adaptation of their Early Intervention websites 15 States have made at least minimal adaptation of their Special Education Websites

Worked w/ AAP SIG Group to Identify Providers that specialize working with Latino CYSHCN Semi-Structured Interview Protocol was used 22 Pediatricians/Pediatric Specialist from 12 States and DC Questions on Barriers, Solutions and Policy Recommendations Pediatrician Interviews

Key Topic Areas –Language –Systems/Insurance –Subspecialty Care –Community-based coordintation –Transition –Special Concerns of Undocumented

Language “Language is a huge issue… language barriers. And sometimes there is the fear about what is the organization, what kind of questions are they asking me, why are they asking me these questions. There is a stigma too about if I bring my children with special health care needs here what are the other parents going to think?”

Language “Language is a huge issue… language barriers. And sometimes there is the fear about what is the organization, what kind of questions are they asking me, why are they asking me these questions. There is a stigma too about if I bring my children with special health care needs here what are the other parents going to think?”  Hire bilingual, bicultural admin staff  Recruit bilingual, bicultural clinical staff  Hire at least one interpreter  Translate key materials into Spanish  Add a notation onto the prescription blank that the patient is Spanish speaking

Systems/Insurance “ Well in general I think issues in access. When kids who have truly very complex special healthcare needs lose Medicaid and are either uninsured or are put into Medicaid managed care, that creates an interruption of services and medications that’s very complex. And that happens often. “

Systems/Insurance  All children insurance programs such as Illinois All Kids and NY State Child Health Plus  Expansion of FQHCs  Coordination of FQHCs with therapies and specialties  Pipeline programs for Hispanic youth interested in health care  Exchanges selecting programs with full benefits “ Well in general I think issues in access. When kids who have truly very complex special healthcare needs lose Medicaid and are either uninsured or are put into Medicaid managed care, that creates an interruption of services and medications that’s very complex. And that happens often. “

Subspecialty Care “The biggest challenges are often to get referrals all the way through … The issue is that one form or one process may break down and unless we keep on top of the referral from beginning to end, the family may just not get to the services.”

Subspecialty Care “The biggest challenges are often to get referrals all the way through … The issue is that one form or one process may break down and unless we keep on top of the referral from beginning to end, the family may just not get to the services.”  Assurance of interpreter services and longer visit time for CYSHCN from Latino families  Telehealth solutions  Co-ordination of community health centers and FQHCs with academic health centers  Pipeline training for Latino youth interested in health careers

Coordination of Care “ Fragmentation of services…many, many Pediatricians don’t know about them, lack of knowledge from clinicians about what’s available there for families, very regional. If there was a mechanism to know what regional resources are available.”

Coordination of Care Practice based coordination of care Co-location of health and mental health services Promotoras and health care navigators Continuation of funding for Family-to-Family programs with long term commitment Scaling up of successful community and family based programs “ Fragmentation of services…many, many Pediatricians don’t know about them, lack of knowledge from clinicians about what’s available there for families, very regional. If there was a mechanism to know what regional resources are available.”

Transition “And then I transferred [my 21 year old patient]. And obviously I always gave him the opportunity to come back for follow- up like three months later to my clinic, just to see how everything was going. And she was like in tears. And she said, “Doctor, I just can’t go on there because [of the way they treat my son].”

Transition  Assure prompt initiation of transition planning with material in Spanish  Legal documents re guardianship need to be prepared according to LEP guidelines  Careful attention to change of health insurance at age 18.  Identification of appropriate PCP  Identification of specialists “And then I transferred [my 21 year old patient]. And obviously I always gave him the opportunity to come back for follow- up like three months later to my clinic, just to see how everything was going. And she was like in tears. And she said, “Doctor, I just can’t go on there because [of the way they treat my son].”

Special Issues of the Undocumented “You were asking about the percentage of documented versus undocumented, I don’t know the answer to that because I don’t ask them those questions.”

Special Issues of the Undocumented  Dream Act  Franken Legislation  Comprehensive Immigration Reform “You were asking about the percentage of documented versus undocumented, I don’t know the answer to that because I don’t ask them those questions.”

The Best Advice for Providers Do not see caring for CYSHCN as a burden See the work as a challenge Look for all the rewards It is a privilege to make a difference for a family

Report On November 8, we held a stakeholder meeting to review the information we had gathered. Report is now finalized and ready for dissemination We would love your input on next steps

¡ muchas gracias !