Reducing Health Disparities for Latino Children with Special Health Care Needs
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Transcript of Reducing Health Disparities for Latino Children with Special Health Care Needs
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
AMCHPWashington, 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 2009-2010, Indicator 5
measurementDuring 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 householdsDID NOT HAVE a medical home
Medical Home/Hogar Médico
75 % Hispanic CSHCN from Spanish speaking householdsDID 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, reportedcommunity 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 !