Family Caregivers of Individuals with Intellectual and Developmental Disabilities:
Experience in States with Medicaid Managed Care Long-Term Services and Supports
Heather J. Williamson, OT, MBA1, Maureen Fitzgerald, MSW2, Annie Acosta, MSW2, Tom Massey, PhD1,3
1 College
of Public Health, Department of Community and Family Health, University of South Florida, 2The Arc, 3College of Behavioral and Community Sciences, Department of Child and Family Studies, University of South Florida
RESULTS
INTRODUCTION
• Majority of adults with intellectual and developmental disabilities (I/DD) continue to
require ongoing support from a family caregiver
To describe experience as family
caregiver
• Family support services build on family strengths and resources to help family
caregivers maintain role while supporting quality of life of person with I/DD
• Family caregivers can access family support services through Medicaid, state funds,
and DD funds
• States moving from fee-for-service to managed care for long-term services and
supports (LTSS) to reduce cost while improving access to services
• Disability advocates concerned about managed care because LTSS are not part of the
medical model
Participant Comments
Objective
Conclusion
“I’ll be honest with you. In some ways, even though the services, I could not do without them for my daughter. I wish I could. I know it sounds really bad, but it •
is just, I know that if something happens to me, then they cannot be managed at the same level, and her life, and the quality of her life will be impacted.” NC
Family Caregiver
“You have to devote yourself to maintaining the plan, to keeping up with service definitions, to learning a whole new language, to managing a staff of people.”
NC Family Caregiver
•
Cannot rely on system alone
“These children are gifts from God. They made us special caretakers.” WI Family Caregiver
•
Wellbeing was impacted by caregiving role
•
Family support services helped the family caregivers maintain
their advocate role
•
Family support services enhance quality of life of individual with
I/DD
“And stress definitely… You might have a few months of low, but your low, you always know it’s when the other shoe is going to drop. You got to get into
action, so whenever that happens, you got to be ready.” NC Family Caregiver
To describe experiences with
family support services
“I do get a lot of lot of help with her, for her, which you know to me, if I didn't get this help I probably would have placed her a long time ago. So it really, it
really does help, it gives me, it gives my husband and I a life where we can do things. ” MI Family Caregiver
“So now, I feel that I am a very strong advocate for my daughter as well as she's been able to have all of this success because we were finally given the
appropriate tools to help her achieve that. And in turn, that benefits us." NC Family Caregiver
• Information about LTSS in a managed care model is limited
Managed Care Access to
Services
PURPOSE
• Given reliance on family caregivers, managed long-term services and supports
(MLTSS) need to be responsive to both needs of individual with I/DD and the family
caregiver
• Goal of this study was to understand experiences of family caregivers of individuals
with I/DD receiving LTSS in a managed care model
After state budget cuts there was a
shift in LTSS availability and flexibility
“So, you get the sense of the family,
that your person that you’re taking
care of has to fit their box as
opposed to having, shall we say, a
sort of, some thoughts about what
would really work well during the
day for an individual.”
METHODS
AZ
• Family caregivers all female, age range 41-86 (mean age=57.9, SD=10.8), individual
with I/DD age range 15-49 (mean age=29.2, SD=10.4)
• Family caregivers asked about their experiences receiving family support services and
with MLTSS overall
• Interviews transcribed, coded, and analyzed for themes with member checking
preliminary results
Arizona
1988-1989
Statewide
Arizona Health Care
Cost Containment
System (AHCCS)
Arizona Long Term
Care System (ALTCS)
Michigan
1998
Statewide
Prepaid Inpatient
Health Plans
County based
State DD Agency acts Community Mental
Health Services
as managed care
organization (MCO) for Programs act as
managed care
MLTSS
organizations (MCOs)
for MLTSS
Wisconsin
5 counties in 2000
North Carolina
2006-2010 expand to
57 of 72 counties
5 counties in 2005
Family Care & Family
Care Partnership
8 regional, countybased managed care
organizations (MCOs)
for health and MLTSS
MI
2012 Statewide
Prepaid Inpatient
Health Plans
11 regional managed
care organizations
(MCOs) for MLTSS
Managed Care Meaning
Better than it used to be, paid
transportation
Managed Care
Coordination
Managed Care
Coordination
Managed care puts less
demands on family
Care coordination about
paperwork processing not
problem solving
Managed Care
Coordination
“When the monies were less.. there
was mass exodus of highly-skilled,
experienced people who had been in
the system as support coordinators
for…many years…it just drove them
out, and in order to meet the
requirements of the managed care
system, the agency had to hire new
people, and they’re pretty green…They
may have lots of energy and
enthusiasm, but they basically don’t
have the years of experience and
knowledge… so, the ability for the
support coordinator to really be a
social worker for that family is pretty
nil.”
Managed Care Access
to Services
Managed Care Access
to Services
Reductions in types of services
available and flexibility in services
with budget cuts
Decline in quality of care coordination
after budget cuts
• Sixteen family caregivers from four states (AZ=3, MI=4, NC=6, WI=3) with
established MLTSS programs for individuals with I/DD completed in-depth semistructured telephone interviews between May and August 2013
Family caregivers felt they had to take on advocate role to
obtain all needed services for their loved one with I/DD
Managed Care Access to
Services
Difficulty to obtain eligibility,
reduction in providers,
reduction in staff pay,
increased staff turnover, and
reductions in access to LTSS
“They have limited services
for us in the last year. They
took power April 1,
2012…and by September
we couldn't even breathe.”
Managed Care Meaning
“To me, it means that someone in
an office might be making
decisions without knowing my son
or without knowing what kinds of
services he would need, and there
might not be flexibility to tweak,
you know, the system as for what
he might need.”
WI
Managed Care Meaning
“If you look managed care up in a
dictionary I bet, or on the internet, it is
going to tell you probably something
like, you know, an organized set of
supports and services. Does in reality
that happen? Not here! Not if you use
multiple services and not if you want
something that is a little more
independent.”
“To me, managed care
is having all the
functions that he needs
in place.”
NC
Managed Care
Coordination
Managed Care Meaning
“Managed Care to me is – Well first of
all, it’s belittling…It’s a dictatorship of
what you deem medically necessary
for me and my family.”
“I call them the Gestapo. They've
just come in and totally wiped us
out and everything positive we
had, it's gone…with this managed
care, it is just gone. ”
CONCLUSIONS
• Family support service availability is vital for family caregivers to maintain their caregiving roles
• Mixed results whether or not managed care improves care coordination and access to services; further exploration of MTLSS is needed
• Given their critical role in disability service systems, family caregivers should be involved in the planning, implementation, and evaluation of MLTSS programs
Presentation is funded by the USF COPH Student Honorary Award for
Research & Practice “SHARP” award program.
Project is funded by the USF COPH, Department of Community and Family
Health Student Research Grant.
Email: hwillia1@health.usf.edu
Care coordination about
processing paperwork, poor
communication from MCO, and
lack of advocacy
“The advocacy piece is
completely gone and
…for most families,
that is going to be the
biggest loss… because
they don’t have
someone to explain to
them. “