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Consumer-Directed Long-Term Services (Care). Nancy Eustis Humphrey Institute, U. of Minnesota MGS 4-24-09. Long-Term Care Policy Context. Rebalancing/balancing Cost-containment Public investment primarily via Medicaid

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consumer directed long term services care

Consumer-Directed Long-Term Services (Care)

Nancy Eustis

Humphrey Institute, U. of Minnesota

MGS 4-24-09

long term care policy context
Long-Term Care Policy Context



Public investment primarily via Medicaid

Medicaid cost control high priority; cost shifting: state to federal, federal to state

Maintain or increase private support

Less ideologically charged than Social Security or Medicare/health reform

cdlts involves personal care services personal assistance services
CDLTS involves personal care services (personal assistance services)

…help with activities of daily living (ADL’s) such as bathing, dressing, and eating, and

[help] with instrumental activities of daily living (IADL’s) such as cooking, shopping, and housekeeping.” [Benjamin, 2001]

Probably does not include medication management, wound care, injections, catheter insertion, bowel care…

rationale for consumer direction
Rationale for consumer direction

Consumer choice & empowerment

1) Independent living movement

(young adults with physical disabilities)

2) Self-Determination

(individuals with developmental disabilities)

3) Autonomy (older adults)

Cost savings

1 independent living movement
1. Independent living movement
  • Thinking of themselves as consumers not clients (or patients)
  • developing a support group to help each other live independently
  • a view of independence as having control over one's life rather than functioning without assistance [No Pity, ch. 2]
independent living model
Independent Living Model

Consumer direction

No physician plan of treatment

No nurse supervision

Assistant recruited by consumer

Assistant trained by consumer

Payment to consumer to assistant

Accountability of consumer

Consumer role

Social service benefit

medical model
Medical Model

Provider direction

Physician plan of treatment

Nurse supervision

Aide provides care

Aide trained by provider

Payment to provider

Accountability of provider

Patient role

Health care benefit

informal model
Informal Model

Family direction

No physician plan of treatment

No nurse supervision

Family / friends provide care

No formal training

No payment

Little accountability

Dependent role

No government benefit

independent living centers provide
Independent living centers provide

Skills training

Peer mentoring

Self advocacy, self help

Group organizing, coalition building

I&R, Access to community resources, including housing

2 self determination
2. Self-determination

Self-advocacy (“people first”) = 2nd wave of revolt against professionals (first wave was by parents)

Self-determination = strategy for reforming systems of long-term services (Thomas Nerney, NH)

Personal advocate or circle of support

Support broker/case manager

Choice of residence

"Money follows the person“ (allows choice of housing)

example of self determination
Example of self-determination

Brokered support (Powers at al, 2006—programs in FL & OR):

broker assists client to:

Define life goals and develop plans to achieve them

Access opportunities, resources, and supports to achieve goals

Obtain information and education

Pay bills and negotiate contracts to employment paperwork

Monitor goal achievement

3 autonomy
3. Autonomy

Older Americans Act: right to “free exercise of individual initiative in planning and managing their own lives”

Research on benefits of control, autonomy: “as he becomes unable to carry out certain activities on his own, he progressively loses decisional control over them. His caregivers do not elicit his choices or they ignore them… they annex his decision-making…” (Callopy, 1990)

sciegaj pg 69
Sciegaj, pg 69

Respondents are seniors

cdlts variations what is the benefit
CDLTS Variations: What is the benefit?
  • Public pay (Medicaid, state funds; 139 programs in 2001
    • Authorized service hours (voucher)
    • Cash (for service hours, other authorized expenses)
  • LTC insurance (medical model or ?)
examples of consumer directed ltss programs
Examples of consumer directed LTSS programs
  • CA: In-Home Supportive Services: depending on county of residence, contract provider or independent provider; purchase services only; state funding; limited supports
  • MN: Consumer Directed Community Supports: County or medical plan case manager and client plan budget based on expenditures for Medicaid-funded services; flexible spending; use of fiscal intermediary encouraged
examples continued
Examples, continued
  • Cash and Counseling: Cash Grant for needed services; provision of counseling; Fiscal Intermediary available
  • ME: Consumer selects, supervises, and oversees payments of provider but contracted intermediary is employer of record
  • Veterans: Housebound Aid and Attendance Allowance Program– cash allowance
arguments for consumer direction
Arguments for consumer direction
  • Responsive to client; more flexible (not just services)
  • Increase provider supply
  • Cost-effectiveness
  • Consumer satisfaction; quality of life
  • No ill affects on health, safety, or liability
ca study ip advantages
CA study IP advantages
  • ethnic and linguistic compatibility of client and worker,
  • less worker turnover, and
  • provision of more unpaid assistance by client employed workers.
ca study agency advantages
CA study: agency advantages
  • greater ease in arranging for services,
  • majority report being able to rely on the agency to provide back up help if the regular worker is unavailable.
cash counseling findings
Cash & Counseling findings
  • More likely to be getting paid services
  • Fewer reported unmet needs
  • Hi satisfaction with services
  • More satisfied with their lives
  • No more adverse events; in 1/3 of comparisons treatment group better off
potential problems of consumer directed lts
Potential problems of consumer directed LTS
  • Who is capable to self direct?
  • Advisability of hiring family members
  • Assuring quality and public accountability without professional oversight
  • Worker fairness
  • Cost-effectiveness
  • Availability of providers
who can self direct
Who can self direct?
  • Use of authorized representatives widely accepted for persons with cognitive impairment (MR/DD, dementia)
  • Availability of supports (e.g. peer support, registries, back up services) facilitate self-direction
  • Self-direction programs becoming available for persons with mental illness
what about self direction for seniors
What about self direction for seniors?
  • Most research findings support self-direction by seniors
  • Young old and those who are medically stable more likely to self direct
  • CA study: Young and old equally satisfied, equally prefer training worker
  • Younger report more unmet needs, more empowerment; seniors more isolated
self direction for seniors
Self-direction for seniors
  • Cash and counseling study:
    • no major differences in outcomes by age
    • Impacts on younger adults tended to be larger except in New Jersey
  • Professionals and case managers have typically been skeptical of self direction by seniors (may be changing)
paying family members
Paying family members
  • Ability to pay family members has become an important component of consumer directed care, especially for seniors
  • In my experience, family is important backup resource
  • What are the pros and cons?
advantages of paying family caregivers
Advantages of paying family caregivers
  • Workforce shortages
  • Provides income to caregivers and may free up their time
  • Familiarity with care needs
  • Preferred by some
disadvantages of hiring family members continued
Disadvantages of hiring family members, continued
  • Diverts attention from improving the work force
  • May reduce amount of unpaid care: California findings – no; cash and counseling findings – yes (purchase of supplies instead)
  • Gender and income inequalities
  • Elder abuse?
quality assurance
Quality assurance
  • Agency-provided care offers professional oversight
  • No evidence of significant differences in/health & safety outcomes in available studies
  • Supportive services can be important
additional issues
Additional issues
  • Payroll taxes and workers compensation insurance
  • Worker issues
    • Caregiver stress
    • Lack of health insurance, sick leave, vacation and other benefits
    • Isolation
intermediary service organizations isos
Intermediary Service Organizations (ISOs)
  • “…acts as interagent between CD-PAS program & eligible consumer for purposes of disbursing public funds and assisting consumers with tasks associated with the employment of [workers]” (Flanagan & Green)
    • Ensure compliance with legal requirements… [wage & tax laws]
    • Offer supportive services to consumers
iso administrative fiscal services
ISO: Administrative/fiscal services
  • disbursing public funds,
  • withholding and filing employment taxes
  • brokering benefits,
  • preparing and disbursing payroll checks and
  • processing employment-related documents including the INS Form I-9, the IRS Form W-2, and timesheets.
iso supportive services
ISO: Supportive services
  • training related to hiring, firing and supervising attendants
  • managing employment taxes and payroll,
  • assisting consumers in obtaining temporary or emergency .back-up. services
  • providing peer counseling,
  • conducting and/or assisting consumers with checking attendant references and/or performing criminal background checks,
  • client assessments
  • providing case management.
key operational issues for state cd pas programs using intermediary service organizations
Key Operational Issuesfor State CD-PAS ProgramsUsing Intermediary Service Organizations
  • By Susan A. Flanagan, M.P.H. & Pamela S. Green, J.D.
  • Prepared for:

U.S. Department of Health and Human Services,

Office of the Assistant Secretary for Planning and Evaluation, Division of Aging and Long-Term Care Policy