1. National Center
On the Ease of Use of Community Based Services
Reducing Health Disparities for Latino Children with Special
Health Care Needs
AMCHP
Washington, DC
February 11, 2013
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

2. Program Objectives
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

3. National Center on the Ease of Use
of Community Based Services
Communitybasedservices.org
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)

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

5. Growth of Latino Population

7. Ease of Use Measurement
• In 2009-2010, Indicator 5
measurement
During the past 12 months did you have any
difficulties or delays getting services for
59% of Hispanic
[child] because…
1. …[he/she] was not eligible for the services?
families found 2. …the services needed were not available in
your area?
services easy to
3. …there were waiting lists, backlogs?
use
4. …of issues related to cost?
versus 5. …you had trouble getting the information
you needed?
68% 6. Difficulties or delays for any other reason?
of non-Hispanic 7. During the past 12 months, how often have
you been frustrated in your efforts to get
White services for [S.C.]?

9. Medical Home

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

11. 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

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

13. 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

14. 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

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

16. 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

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

18. 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

19. Pediatrician Interviews
• 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

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

21. 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?”

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

23. 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. “

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

25. 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.”

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

27. 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.”

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

29. 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].”

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

31. 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.”

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

33. 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

34. 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

35. ¡ muchas gracias !