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
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
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)
Why focus on Latino population?
Growing population
Concern of AMCHP, FAMILY VOICES, PACER & AAP
Availability of data
Significant disparities
Growth of Latino Population
Ease of Use Measurement
•
59% of Hispanic
families found
services easy to
use
In 2009-2010, 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?
versus
68%
of non-Hispanic
White
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.]?
Medical Home
Medical Home/Hogar Médico
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
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
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
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
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 followup 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 followup 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 !