Lori Simon-Rusinowitz, PhD; Dana J. Martin, MPH; Genevieve Martínez García, MA

1. An Option to Hire Relatives as Caregivers in Two States:Developing an Education and Research Agenda for Policy Decision-Makers Lori Simon-Rusinowitz, PhD; Dana J. Martin, MPH; Genevieve Martínez García, MA Michele DeBarthe Sadler, PhD; Lori N. Marks, PhD; Dawn M. Loughlin, PhD University of Maryland Center on Aging Jane Tilly, DrPH, Alzheimer's Association Kevin J. Mahoney, PhD, Boston College Presented at: The Gerontological Society of America 58th Annual Scientific Meeting Orlando, Fl November 21, 2005 Contact Information: LASR@umd.edu Project funded by: US DHHS Office of the Assistant Secretary for Planning and Evaluation

2. Introduction “Our research findings deliver a useful reminder to those who think that producing good research is sufficient to improve the shape of long-term care. The policymakers…told us, loud and clear, that academic-quality research is not reaching them. Therefore, more effort must be devoted to the task of synthesizing, translating, and disseminating research information to policymaker” (Hollander Feldman, 2001). Hollander Feldman, P., Nadash, P., Phil, B. & Gursen, M. (2001). Improving communication between researchers and policy makers in long-term care: Or, researchers are from Mars; policy makers are from Venus. The Gerontologist, 41 (3), 312-321.

3. Long-Standing Beliefs About this Policy Option “The majority of respondents were concerned about potential negative consequences of a family payment policy…most spoke about increased government costs due to policy abuse, including problems related to a “woodwork” and “substitution” effect, families feeling entitled to payment, families accepting pay without providing services …” (Simon-Rusinowitz, 1987) Simon-Rusinowitz, L. (1987) Government participation in long-term care of the elderly: Analysis of a policy to pay family caregivers. Dissertation submitted to the University of Illinois at Chicago.

4. Study Purpose • Document views of policy experts in two states about a policy option to hire relatives as caregivers • Identify information needed by other states considering this option • Learn effective approaches to disseminate this information • Present a research and education agenda to communicate these issues to policymakers.

5. Background Information:Family Caregivers’ Role • Critical role of Families in Providing Care to Elders and Persons with Disabilities • 44.4 million Americans are caregivers (21% of the adult population) • 83% of these caregivers are relatives • Family caregivers have multiple responsibilities • Two-thirds of family caregivers in this country are working • 41% have one or more children under 18 years old living in their household

6. Opponents of the policy Appropriate public-private responsibility Quality and oversight Fears of exploding public costs for services primarily for free Proponents of the policy Increasing consumer choice Improving the quality of care Expanding the limited worker supply Background Information:The Policy Debate

7. Background Information:The Policy Debate • This debate is especially relevant in the context of: • Growing concern about the limited direct-care labor force • An increased focus on consumer-directed, community-based services for persons of all ages • The effects of caring for a disabled relative on family employment • The effects of caring for a disabled relative on retirement income.

8. Background Information:Cash & Counseling Demonstration Evaluation • More than 50% of participants hired relatives when given the option. • Consumers who hired relatives: • were more satisfied with their care • reported fewer adverse health effects • were more likely to receive care during non-traditional hours • reported less unmet needs for personal care. • The CCDE found no major instances of fraud or abuse.

9. Two-State Case Study Methodology:Sample Selection • 2 States selected (State 1 & State 2) • States nominated by national experts • Selection criteria: • a state that decided to allow or not allow hiring relatives as caregivers • a state that recently changed its policy about hiring relatives as caregivers • a state with a policy to hire relatives as caregivers that recently has had a new issue arise in relation to this policy • 31 Key informants were: • identified by leaders in each selected state • very influential in each state’s decision-making process • representing a broad range of opinions. • Identity of states and participants remains anonymous.

10. State 1 (n=15) Population groups represented Elders (3) Adults with PD* (1) Adults & Children with DD** (4) Multiple Groups (7)*** Roles represented**** Advocate (4) State/Regional official (10) Researcher (2) Provider (5) Consumer (1) State 2 (n=16) Population groups represented Elders (3) Adults with PD (2) Adults & Children with DD (3) Multiple Groups (8) Roles represented Advocate (9) State/Regional official (9) Researcher (1) Provider (1) Consumer (2) Informal caregiver (1) Two-State Case Study Methodology:Sample Description * Physical disabilities ** Developmental disabilities ***One informant may work with multiple population groups. **** One informant may have multiple roles.

11. Two-State Case Study Methodology:Sample Description • For example: • An expert in State 1 works for adults with physical disabilities, is a consumer, a provider, and is a former advocate. • An expert in State 2 works with adults and children with developmental disabilities, is a state or regional official, and a former advocate.

12. Two-State Case Study Methodology:Data Collection • Semi-structured in-depth interviews • Length range: 55-125 minutes; Average length: 88 minutes • Approximately 45 hours of interview data

13. Research Questions & Issues Addressed in Interview Questions • What processes have the states used to make decisions about a policy to hire relatives as caregivers? • Factors motivating the states’ decision-making regarding a policy to hire relatives as caregivers • Factors serving as barriers in the states’ decision-making process regarding a policy to hire relatives as caregivers • What are the views of key opinion leaders in the states about the major policy advantages and disadvantages of hiring relatives as caregivers?

14. Research Questions & Issues Addressed in Interview Questions • What are the key issues needing to be addressed in a research and education agenda that would further knowledge about hiring relatives as caregivers, as it affects consumers, family caregivers, provider agencies and state programs/payers? • Issues states need to consider before implementing a policy option to hire relatives • Information needed to make decisions about hiring relatives as caregivers

15. Research Questions & Issues Addressed in Interview Questions • How do we disseminate current research findings to inform policy decisions about an option to hire relatives as caregivers? • Trusted sources of information about current policy research addressing home and community-based services • Approaches to disseminate information to policymakers about home and community-based services

16. Two-State Case Study Methodology:Analysis • Research questions guided coding and analysis plans • Each state analyzed separately • MaxQDA qualitative data analysis software • Themes identified and tables developed for each research question • Team meetings to verify the meaning of themes • Themes counted to indicate how often respondents discussed key issues • Data for both states combined into final tables

17. Findings:Factors Motivating States’ Decision-Making • Policy addresses workforce issues (39)* • Supportive political climate for the policy (19) • Consumer advocate support for the policy (19) • Increased emphasis on community services (15) • Policy addresses budget issues (8) • Success of similar programs (5) • Policy increases access to services (5) • Policy addresses quality of care (3) * The number indicates how many times respondents mentioned each theme.

18. Findings:Factors Motivating States’ Decision-Making Workforce issues “…we had a very serious worker shortage…that’s when this (hiring family caregivers) really took off…” (Advocate) Supportive political climate “…the governor…told the cabinet members to prioritize areas for reform and bring them to him, but just to make sure that long-term care was number one, at the top of the list. So, that really was our marching orders.” (State or Regional Official) Consumer advocate support “…families who had been caring for their adult child who is now 32 and them feeling like it’s time to be able to have their child either live more independently or be able to have different experiences. They, too, are pretty strong advocates for being able to direct hours, including paying themselves.” (State or Regional Official) Emphasis on community services “Paying family caregivers…is just a tool in the rebalancing of emphasis from institutional to home and community-based care.” (State or Regional Official)

19. Findings:Barriers in States’ Decision-Making • Policymakers’ concerns (27) • Budget concerns (15) • Lack of support from the mental retardation community (11) • Belief that CMS won’t pay (7) • Concern that families would prevent individuals’ independence (6) • Lack of advocacy and interest from elderly (3) • Legal action within the state (3) • Provider agency opposition (3) • Reluctance to address problems through legislative change (3)

20. Findings:Barriers in States’ Decision-Making Policymakers’ concerns “…my boss at the time was nervous as a cat on a hot tin roof, as it were, because one imagines in the urban centers, if anything can go wrong, it will go wrong.” (State or Regional Official) Budget concerns “The previous administration was a fairly conservative administration, which basically needed to be convinced of the cost effectiveness of virtually anything we did.” (State or Regional Official) Lack of support from the MR community “There is a fair amount of infighting between the various disability communities…a fair amount of competition for scarce resources…people with disabilities resent the fact that people with mental retardation seem to have all this money.” (Researcher) Belief that CMS won’t pay “…in the few cases where we’ve tried (to hire family caregivers), we’ve been told that the feds don’t pay for it and that, therefore, it’s not a reimbursable service… we’ve been told, basically, families cannot be paid.” (Informal Caregiver, Advocate)

21. Findings:Differences by Consumer Groups in States’ Decision-Making • Elders • Elderly More Interested in Safety vs. Independence (5) • Lack of advocacy from elders (2) • “…the aging system comes from a tradition of the “Care and Comfort model”, whereas the adult disability system in (this state) is very oriented to the independence movement. So, informal and family supports are something that’s really treasured and maximized in our aging culture, historically.” (State or Regional Official) • Adults with physical disabilities • PD Strives for Independence (3) • “I know that, with the younger physically disabled community, there is a very different concern than there is in aging. Their concern is independence from family and wanting to not have the family involved in decisions.” (State or Regional Official)

22. Findings:Differences by Consumer Groups in States’ Decision-Making • Adults & Children with developmental disabilities (DD) • History of Paying Relatives and/or Consumer Direction in the Mental Retardation (MR) Community (10) • MR Consumers May Need More Support (4) • “In the MR world, which was the first waiver, there is a history of parents providing services for adult children. And, I think the (MR Office) understood that and accepted that, so they allowed that to be paid for.” (Advocate) • Multiple groups • Different Policies for Each Population (5) • “A big part of the problem in (this State) is it was different policymakers who were writing the policies. The people who wrote the MR waiver was a completely different crew of folks who did the disabilities waiver and who did the aging waiver.” (Advocate)

23. Advantages Increased satisfaction and comfort with care (44) More access to workers (12) Able to choose and direct their own care (10) Families committed to high quality of care (7) Consumer can stay home (5) Family can be back-up (3) Helps those with complex medical needs (1) Disadvantages Could feel pressured to hire family and unable to assert independence (20) Difficult making requests of or firing family (18) Possible exploitation and abuse (13) Difficult family relations (7) Lack of control over care (6) Isolation of consumer (2) Quality assurance of cognitively disabled (1) Findings:Advantages & Disadvantages for Consumers

24. Findings:Advantages & Disadvantages for Consumers Advantages Increased satisfaction and comfort with care “And, be with someone (family caregivers) who maybe they’ve already built a relationship with, who they know will respect them and let them make their choices, give them the services that they want and let them direct their care” (Advocate) More access to workers “There are access issues in terms of not being able to access services in some parts of the state, other than family or relatives.” (State or Regional Official) Able to choose and direct their own care “If I can bring my family member in to provide the service with public dollars, I have a little more control over what happens.” (State or Regional Official, Researcher)

25. Findings:Advantages & Disadvantages for Consumers Disadvantages Pressure to hire family and unable to assert independence “…the consumer may not want mom or dad providing the care, but doesn’t feel like they’re in a position to say anything…in some cases, probably without mother or father even realizing it…they are forcing greater dependency on mom and dad.” (Provider, Consumer, Advocate) Difficult making requests of or firing family “And then, there is the question of you can’t fire your mom or your dad or your spouse if they’re doing a bad job.” (State or Regional official) Possible exploitation and abuse “…if a family member gets the money, sometimes, the rights of that elder are not recognized. And, there could be an abusive situation set up, so that might be one of the major obvious disadvantages that may still put the care recipient in a less than advantageous position.” (Advocate)

26. Advantages Removes need to choose between paid work and caring for loved one (23) Increased satisfaction with caregiving arrangements (13) Reduce family’s stress (3) Recognition for family caregiver’s work (2) Access to caregivers for families w/ complex needs (2) Increase access to workers (1) Respite for caregivers (1) Disadvantages Possibility of being overworked and underpaid (9) Difficult family relations (9) Could feel pressured to provide care (8) Discomfort with program oversight (3) Caregiver can become dependent on income (2) Guilt about accepting money to care for a relative (1) Caregiver gets little training (1) Findings:Advantages & Disadvantages for Family Caregivers

27. Findings:Advantages & Disadvantages for Family Caregivers Advantages No need to choose between paid work and caring for loved one “…Many families are doing it (providing care) at great sacrifice to the entire family and…I think, end up injured themselves or in financial trouble or completely burned out. And, they’ll have to make…Sophie’s type choices. It’s devastating.” (Advocate) Increased satisfaction with caregiving arrangements “Having people (PAS agency workers) come in and out of your house is very wearing and really destroys the privacy in any individual family.” (State or Regional Official)

28. Findings:Advantages & Disadvantages for Family Caregivers Disadvantages Possibility of being overworked and underpaid “If a family caregiver lives with the consumer, they’re there 24 hours a day, seven days a week. And, if you pay them for part of that time, they’re still there 24 hours a day, seven days a week. So, it’s very difficult and then they may feel trapped,…like they have to do it in order to maintain that payment and they don’t feel like they can get out anymore. So, I think the potential for burnout is there.” (State or Regional Official, Provider) Difficult family relations “…that (hiring a spouse) can have some potential detrimental side effects into the relationship of a husband and wife… if there’s been a little bit of an argument…then it’ll come out, “Well, you’re getting paid to do this, so you’re my slave. You are here to do this and you’re getting paid to do this so, damn it, you’d better do it.” (Provider, Consumer, Advocate)

29. Advantages Increased agency’s labor pool (17) Provide reliable, high quality service (6) Keeps administrative costs down (2) Makes agency look good (2) Disadvantages Loss of business (14) Difficulty monitoring care and firing family caregiver (9) Difficult for agencies to meet consumer demand (1) Findings:Advantages & Disadvantages for Provider Agencies

30. Findings:Advantages & Disadvantages for Provider Agencies Advantages Increased agency’s labor pool “If paying people (family) is really an issue about access…simply allow someone to use an agency and also use their family, and everyone wins.” (State or Regional Official, Researcher) Provide reliable, high quality service “…if there are people who can receive care from a family member, an agency is more likely to be able to apply their staffing to people who do not have anyone else.” (State or Regional Official)

31. Findings:Advantages & Disadvantages for Provider Agencies Disadvantages Loss of business “They (provider agencies) see themselves, perhaps, as losing business.” (Advocate) Difficulty monitoring care and firing family caregiver “We also wonder if there wouldn’t be an issue with more difficulty in supervising. I mean, if the mother even of an adult child is the care provider…and the mother then differs with the opinion of the supervising nurse, I think there can be conflict. There is a different kind of working relationship, I think, with those agencies.” (State or Regional Official, Provider)

32. Advantages Economic benefits (20) Increase labor pool (14) Provide high quality care (9) Increase ability to provide services (6) Disadvantages Possible misuse of funds (13) Difficult assuring quality (11) Possible use of public funds for private expenses (10) Possible increase of program costs (9) Findings:Advantages & Disadvantages for State & Regional Programs

33. Findings:Advantages & Disadvantages for State & Regional Programs Advantages Economic benefits “There are some overall economic advantages…from an economic point of view, it makes sense to be paying the family caregivers…if they weren’t doing it, there would be an increasing burden on the public sector.” (State or Regional Official) Increased labor pool “…we had a very serious worker shortage…Access was a big problem …because you can provide access and…stability, because the person (family caregiver) is there and you don’t have to worry about getting them there in a storm or showing up, or deciding to take a better job…at least the person is…very connected and very likely to be a reliable person.” (Advocate)

34. Findings:Advantages & Disadvantages for State & Regional Programs Disadvantages Possible misuse of funds “…we have concerns around some families seeing it (payments to family caregivers) as income assistance as opposed to providing a service…there are some families who do look, unfortunately, upon this as a way to supplement the family income.” (State or Regional Official) Difficult assuring quality “…if there is any situation where things are occurring that shouldn’t be or they (family caregiver are) not actually providing all the care that they (family caregivers) said they would, how would you really know? …what’s the government’s role…?” (State or Regional Official) Possible use of public funds for private expenses “Are we funding their lifestyle…I didn’t get paid for taking care of my child. “ (State or Regional Official)

35. Conclusions:Education Agenda • Address states’ key motivating factors • Increase access to workers • Good quality of care and consumer outcomes • Consumer satisfaction with care • Address policymakers’ fears and concerns • Fraud and abuse • Satisfaction with care • Consumer-directed services, including hiring relatives, not a replacement for agency services • Fear of “woodwork” and “substitution” effects • Difficulty firing a relative • Include implementation lessons • Program design • Screening consumers for cash option • Fiscal services and quality assurance

36. Conclusions:Education Agenda • Address state’s key motivating factors • Cash option increased access by hiring non-traditional workers • Quality of care and consumer outcomes as good or better as agency workers • Consumers who hired relatives were generally satisfied • Address policymakers’ fears and concerns • Fears of fraud and abuse were unwarranted as safeguards were used to prevent it. • The majority of cash option consumers (most of whom hired relatives and friends) were satisfied with their care. • Consumer-directed services, including the option to hire relatives, are not a preference for everyone and are not a replacement for agency services. • Knowledge about a low take-up rate among eligible consumers (approximately 10-15% across the three Demonstration states) can address policymaker concerns about a “woodwork” effect and provider concerns about loss of business • Knowledge that families continued to provide many hours of unpaid care even when a relative became a paid caregiver, and often used their wages to buy items for the consumer, can addresses policymakers’ concerns about a “substitution effect.” • If consumers needed to fire a relative and had difficulty, they could ask for help from counselor. • Include implementation lessons • Program design • Screening consumers for cash option • Fiscal services and quality assurance

37. Conclusions:Research Agenda • Respondents want further information about: • Other states’ experience with this policy option • Costs specific to hiring relatives • Implementation lessons specific to hiring relatives • Level of consumer-direction when relatives provide care • Long-term impact of this policy option

38. Conclusions:Research Agenda • Respondents want further information about: • Other states’ experience with this policy option • States would like information from additional states with this policy experience. • Cost information specific to hiring relatives • Does hiring relatives saves money, and if so, how are these savings realized? • Implementation information specific to hiring relatives • Respondents wanted to know how to define when it is appropriate to pay a relative as a caregiver, which relatives are appropriate to pay, and for what services. • Are services truly consumer-directed when a family member provides services? • Who really makes decisions when a family member provides paid services (i.e. the consumer or family member?). • Long-term impact of this policy option • Does this policy option: a) allow consumers to stay in their homes (vs. institutional care), and for what period of time? b) allow consumers and family members to remain independent or become dependent on public funds?

39. Conclusions:Information Dissemination Strategies • Use many dissemination avenues • Provide information to legislative staff • Include first hand accounts • Use a concise and attractive format • Convey information in hardcopy and electronically • Use specific avenues for each consumer group • Use language that eases worry

40. Conclusions:Information Dissemination Strategies “…one of the issues with paying family caregivers…is that when we talked about supporting families, we could do anything. I could get up, and did, in front of the state legislature and talk about paying to take care of the dog because of the anxiety it produced when somebody had to go to the hospital and everybody would smile. But, if I was talking about paying dog sitters as part of our policy I would have been killed…that’s where I think the support for the policy, which is absolutely sensible, is going to have to be articulated well.” (State or Regional Official)