INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Preferences For Consumer-Directed Services Among Different Consumer Groups: Cash and Counseling Demonstration and Evaluation Early Findings

Lori Simon-Rusinowitz, PhD, Deputy Project Director
Kevin J. Mahoney, PhD, Project Director
University of Maryland Center on Aging

Presentation Purpose

  • Address preferences for consumer-directed services among different consumer groups
  • Consumer groups addressed:
    • Younger/older consumers
    • Different racial/ethnic groups
    • Consumers with different levels of disability
    • Consumers with cognitive disabilities
    • Consumers with a relative/friend to hire as a paid worker

Cash and Counseling Demonstration and Evaluation (CCDE) Data Sources

CCDE Background Research

  • Determining Consumers' Preferences for a Cash Option: A Three-Part Study
    • Part 1: Pre-survey Focus Group Discussions
    • Part 2: Telephone Surveys
    • Part 3: Post-Survey Focus Group Discussions

CCDE Research with Program Participants

  • Social marketing/outreach focus groups
  • Surveys of cash option consumers: Preliminary findings
  • Case studies of cash option consumers
  • Quality assurance study

Social Marketing/Outreach Focus Groups

  • Purpose: To develop outreach strategies to inform personal care consumers and their families about the cash option
  • Conducted with Florida Departments of Elder Affairs and Developmental Services
  • Elder Affairs focus group participants: 45 case managers, consultants, and supervisors in four focus groups, October 2000
  • Developmental Services focus group participants: 24 Family Care Council members, Independent Support Coordinators, and self-advocates in three focus groups, December 2000-March 2001
  • Conducted by University of Maryland Center on Aging

Case Studies of Arkansas Cash Option Consumer Team Triads

  • Purpose: to develop "stories" describing the experiences of 27 Arkansas cash option consumers and their relationships with team triad members
  • In-depth, in-person interviews with consumers, representatives when needed, paid workers, and counselors, March-June 2000
  • Conducted by University of Maryland, Baltimore County, Department of Sociology and Anthropology

Arkansas Quality Assurance Study

  • Purpose: To develop an approach to assuring high quality personal care services consistent with consumer-direction principles.
  • Focus groups with Arkansas cash option consumers, family members, and paid workers, April 2001
  • Conducted by Scripps Gerontology Center, Miami University

Older/Younger Consumers

CCDE Background Research

  • Telephone survey (n=2140):
    • Interest in the cash option tends to decline with age; however, a high percentage of older consumers were interested.
    • Interest peaked in the 30's-50's (about 60% of consumers), about 50% of consumers in the 60's, and about 30-40% of consumers in their 70's-90's were interested in the cash option.

Preference Study Focus Group Findings

  • Consistent with survey findings, focus group participants indicated various levels of interest in the cash option among younger and older consumers.
    • Some consumers of all ages liked the idea of a consumer-directed cash option.

      "I think it would be great. WHY? Because I would have the control over who was going to come into my home, and what they were going to do and how they were going to do it." (FL Elder)

      "...you're in charge. You're the one that dictates what these people are going to do for your care." (FL Elder)

      "This is a great program. It's really good...it puts me in a position of not being beholden and not being under someone else's thumb." (NY Consumer <65)

    • Some consumers of all ages disliked the idea of a cash option.

      "I think it would be best for us to keep our program like it is. They might not give you enough money to pay for this stuff. Then...you haven't got anything." (FL Elder)

      "Already we're dealing with our medication, we're dealing with our doctors, we're dealing with our families...this is just the worst." (NY Consumer <65)

CCDE Research with Program Participants

  • Preliminary findings show that 73% of 200 Arkansas Demonstration consumers are elderly and 54% of 231 New Jersey Demonstration consumers are elderly.
  • Case Studies of Arkansas Cash Option Consumer Team Triads:
    • Ms. Gwen Fuller, a 69 year old, African-American woman, was able to leave a nursing home and move into her niece's apartment with her cash benefit.
    • Her niece moved into a larger apartment and began a home-based business so her aunt could live with her.
    • Ms. Fuller's niece is her representative and her grandniece is her paid worker.
    • She is surrounded by family.
  • Social Marking/Outreach Focus Groups:
    • Florida Department of Elder Affairs case managers overwhelmingly believe that older persons are not good candidates for the cash option.

Consumers from Different Racial/Ethnic Groups

CCDE Background Research

  • Telephone survey (n=2140):
    • African-American respondents were 1.9 times as likely to be interested in the cash option, and Hispanic consumers were 1.6 times as likely to be interested in the option when compared to Caucasian respondents.
  • Preference study post-survey focus groups
    • When focus group participants were asked why they thought African-American and Hispanic survey respondents showed greater interest in the cash option than Caucasians, consumers and surrogates in all four states cited similar reasons:
    • The cultures of African-Americans and Hispanics tend to have strong family networks and emphasize caring for family members
      • ...they are more caring. They got that family value or something. When it comes to sticking together, mostly they are really tight. (NJ African-American Representative)
      • "We're very interested, and our families, we want to have them in our homes. (NJ Hispanic Representative)
    • The ability to feel independent and in control would be a source of pride for African and Hispanic participants.
      • "And we've been dependent on the government so long. A program comes along like this, it seems like heaven. Yeah, right." (AR African-American Consumer)
    • The cash option could bring much-needed jobs (as personal care workers) to African-Americans and Hispanics.
      • "It would be an income for someone else. ...some want to work and really need to work and can't get a job...So most likely, there are some young ladies out there who would be glad to sit with the elder person, to have an income..." (AR African-American Representative)

CCDE Research with Program Participants

  • Case Studies of Arkansas Cash Option Consumer Team Triads:
    • Mrs. Cynthia Williams, an 85 year old African-American woman, lives with a daughter who is her paid worker.
    • Another daughter is her representative.
    • They describe their sense of family responsibility in caring for their mother:
    • "It's basically a family thing. We just help Momma out. ...she provided for us and let herself go, and now is our time to try to help her as much as we can. ...I can remember times she made sure we had shoes and she was putting cardboard in the bottom of her shoes..."
  • Arkansas program experience: Arkansas participants are 64% Caucasian (1289/2008) and 33% African-American (667/2008), which is slightly higher enrollment among African-American consumers than expected from the racial composition of Arkansas personal care client population.

Consumers with Different Levels of Disability

CCDE Background Research

  • Telephone survey (n=2140):
    • Consumers classified in the severe range of the ADL scale were 1.5 times as likely to be interested in the cash option as those in either mild or moderate categories of disability.
  • Preference study focus group findings:
    • When asked to explain why consumers with more severe disabilities were more interested in the cash option, focus group participants offered poignant insights.
      • "The more disabled you are, the less disabled you want to be. If you can manage your own care in any degree of normalcy, it helps you to be like the rest of the world." (FL Consumer)
      • "...you have a say so in your life again. You have no control over your life." This way you're working your way up...It gives you a sense of independence that you are somebody, you're not just a number in a file cabinet somewhere. (FL Consumer)
      • ...when you're in a terminal type of disease and you're working real hard to still hold your dignity...to feel a certain amount of pride in yourself..." (FL Elder)

CCDE Research with Program Participants

  • Surveys of Arkansas Cash Option Consumers: Preliminary Findings
    • For the first 200 cash option consumers, more than half reported being in poor health, most with chronic illnesses.
    • Many have extreme difficulty with ADL's, leading more than 60% to have paid help with getting out of bed and 90% to have paid help with bathing.
    • More than half needed paid help with eating and using the toilet.
  • Case Studies of Arkansas Cash Option Consumer Team Triads:
    • Daniel Gentry, is a 20 year old young man with advanced muscular dystrophy.
    • He has a high level of disability and "needs help with just about everything," including a ventilator for breathing and a feeding tube for eating.
    • He is intellectually engaged and active in many projects.
    • Daniel lives with parents; his mother is his paid worker.
    • The cash option has allowed his mother to stop babysitting in their home, which put Daniel's health at risk from illnesses brought into the home.
    • It allows her to provide his extensive, complicated care, which is very important as there are very few people with whom she would entrust his care.
    • "The biggest thing I'm enjoying is to afford entertainment for him. I can rent him a DVD, I can rent him a movie, we can go to the movies, we can afford to put gas in the motor home to go camping again. The motor home sat there all of last summer...(because they couldn't afford gas)." "We try to have some fun everyday."

Consumers with Cognitive and Developmental Disabilities

CCDE Background Research

  • Telephone survey findings:
    • Florida surrogates for children with developmental disabilities had the highest level of interest among all survey participants--79% (n=399) were interested in the cash option.
    • Among Florida adults with developmental disabilities, 45% (n=378) of all consumers were interested in the cash option.
    • When Florida surrogates for adults with developmental disabilities were asked about their own interest in the cash option, 45% (n=267) were interested.
    • Surrogates' (for adults with developmental disabilities) interest in the cash option is highest among surrogates in their 40's, and decreases as the ages of consumers and surrogates increase. However, almost one half of surrogates in their 60's and over one-third of surrogates in 70's are interested.
  • Preference study focus group findings
    • Of all the pre-survey groups, parents of children with developmental disabilities were by far the most enthusiastic about the cash program.
      • "There's no spontaneity in our lives whatsoever...it would give us much more freedom."
    • Parents or representatives of older children with developmental disabilities were less interested in the cash option.
    • They explained that parents became "burned out" and may not want to take on the additional responsibilities required by participation in the cash option.
      • "...parents get so fried by the time their kids reach nine, ten years of age, that they want somebody else to do everything..., because you fight with the schools, you fight with the doctors, you fight with the states." (FL Parent of Child with Developmental Disabilities)
    • Older representatives were less interested in the program. They discussed retirement, lack of resources and support, and their own health issues as they age to explain this finding.
      • "It's a physical thing. As children get older, obviously we get older. ...you have to say, gee...Can I do this in ten years? Can I do it in five years? (FL Parent of Child with Developmental Disabilities)

CCDE Research with Program Participants

  • Florida Developmental Services social marketing/outreach focus groups
    • When asked to help explain the survey finding that many older parents of adult children with developmental disabilities remain interested in the cash option as they aged, parents of children with developmental disabilities offered this insight.
      • Older parents see younger children as having much more opportunity today than their children had.
      • No matter how old the parents, they want more opportunity for their adult children now.
    • A mother of a daughter with developmental disabilities reported "it's horrendous as far as getting providers and it's great to be able to know you can use your family members. You can use your family members. You can use your neighbors. You can use people from church."
    • One mother of a son with developmental disabilities was able to visit Vietnam to see family as...she was able to get somebody that she trusted with her son.
  • Arkansas quality assurance focus groups
    • A mother of a daughter with severe developmental disabilities defined quality/satisfaction with the cash option as being able to hire a close friend/nurse to care for daughter.
    • This arrangement offers the mother respite. She can save hours to go on vacation with other family members, and her friend can care for her daughter.

Consumers with a family member/friend ready to hire

CCDE Background Research

  • Telephone survey findings (n=2140):
    • When asked reasons for being interested in the cash option, 90-92% of consumers across four states reported that being able to hire your own worker, including a friend or relative, made them interested in this program.
  • Preference study focus group findings
    • While most focus group participants agreed that the option of hiring relatives or friends as their personal care worker was a positive program feature, reactions were mixed about doing so.
    • On the positive side:
    • Consumers would be able to pay a friend or family member already helping them out with personal care needs.
      • "For once, your family member can actually help you and get paid..." (NJ African-American representative)
    • Relatives would know better the special needs, likes and dislikes of the consumer for whom they are caring, and it enables the consumer to pay them for the work they do.

      "I'd rather trust someone in the family's that's capable." (NY Caucasian Representative)

      "I like the idea of friends and family, because they more or less know what I like and how I like it." (FL Caucasian Consumer)

      "...if I had the option to have a family member or a friend come in, it would be a blessing. Because at the same time there are family members who don't have a job and who know my needs and would be able to care for me." (NJ African-American Consumer)

    • Hiring a relative or friend would enable consumers to hire someone of the same ethnicity, an important factor for African-Americans and Hispanics.

      "Hispanics know how to pick up a fruit or a vegetable...I prefer Hispanic, because of this aspect of it. Because Hispanics, you could say, buy me something, and they know." (NJ Hispanic Elder)

    • However, others were more skeptical of hiring family and friends.

      "I don't think all family members would be as professional as you would hire someone out from an agency." (FL Elder)

      "Money and friends or family never mix." (NY Consumer)

CCDE Research with Program Participants

  • Cash Option Consumer surveys in Arkansas and New Jersey: Preliminary Findings
    • Arkansas consumers almost always hired people they were already close to personally.
    • Over three-fourths chose a family member, and another 15% opted for a friend, neighbor, or church member.
    • Consumers reported high satisfaction levels with times of day they could get help (95%), the care arrangements they made, and their relationship with their hired worker (100%).
    • Three-fourths of the 81 New Jersey clients who hired caregivers hired family members.
    • 37% hired friends, neighbors, or church members.
    • 27% hired a caregiver recommended by family or friends.
    • 27% hired former home care agency workers.
    • Case Studies of Arkansas Cash Option Consumer Team Triads:
      • Mrs. Pearl Rose, an 87 year old white woman, lives alone, has several daughters who live close by to provide 24 hour/day care.
      • She has several serious medical problems--she needs to be fed through a feeding tube, she has a blocked heart artery that is inoperable, and she requires breathing treatments four times/day.
      • She is never left alone, even at night.
      • The seriousness of Mrs. Rose's physical problems and the need for constant monitoring require a true sense of devotion on the part of her family.
      • Her daughters have taken care of her for two years as they did their late father.
      • As one daughter explained, "There are four girls and three husbands and it takes all of us and a cousin.
      • That way we take care of it, and we know that she is taken care of."

Conclusions

Conclusions about the Preferences of Different Consumer Groups for Consumer-Directed Services

  • While younger consumers are more interested in a consumer-directed cash option, many older consumers are interested.
  • The majority of consumers participating in Arkansas and New Jersey are elderly.
  • Preference study findings indicate that African-American and Hispanic consumers are more interested in a consumer-directed cash option than Caucasian consumers.
  • Experience in Arkansas indicates slightly higher enrollment among African-Americans than expected from the racial composition of the eligible Arkansas personal care client population.
  • Preference study findings and actual program experience indicate high levels of interest among consumers with severe disabilities.
  • Preference study findings and very initial program experience indicate high levels of interest among families of children and adults with developmental disabilities.
  • Preference study findings and actual program experience indicate high levels of interest among consumers with family members or friends available to hire as paid workers.

Program Implementation Recommendations

  • Cash option program features need to be flexible enough to include consumers of all types. Key cash option features that allow this flexibility include:
    • representatives for consumers needing help with cash option tasks
    • training to help consumers and representatives manage cash option tasks
    • bookkeeping services (fiscal intermediary) to assist with payroll tasks
    • consultants to help consumers and representatives manage the program and oversee cash management plans
    • ability to hire family members/friends as paid workers
    • help linking consumers and workers for consumers without family members/friends available as paid workers