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

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

INTRODUCTION • Majority of adults with intellectual and developmental disabilities (I/DD) continue to

require ongoing support from a 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 • Information about LTSS in a managed care model is limited

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

METHODS • 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 semi-structured telephone interviews between May and August 2013

• 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

RESULTSObjective Participant Comments Conclusion

To describe experience as family caregiver

“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 “These children are gifts from God. They made us special caretakers.” WI Family Caregiver “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

• Family caregivers felt they had to take on advocate role to obtain all needed services for their loved one with I/DD

• Cannot rely on system alone

• Wellbeing was impacted by caregiving role

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

• Family support services helped the family caregivers maintain their advocate role

• Family support services enhance quality of life of individual with I/DD

“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.”  

Managed Care Meaning

 After state budget cuts there was a

shift in LTSS availability and flexibility

Managed Care Access to Services

“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.” Managed Care Coordination

Decline in quality of care coordination after budget cuts

  “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.”

AZ

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

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.”

MI

Managed Care Access to Services

Managed Care Coordination

Reductions in types of services available and flexibility in services

with budget cuts

Care coordination about paperwork processing not

problem solving

Managed Care Meaning

“To me, managed care is having all the functions that he needs in place.”

WI

Managed Care Access to Services

Managed Care Coordination

Better than it used to be, paid transportation

Managed care puts less demands on family

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. ”

NC

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 Coordination

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. “