Self/Family Directed Home and Community-Base

Two “Self/Family-Directed Modes of Service Delivery: Employer vs. Budget Authority “Employer Authority” Self-Direction limits beneficiary/family choice and control to hiring/firing and supervising individual aides of their choosing. Number of hours and hourly wage rate is set by the program. Began in California in 1974, due to strong advocacy by the Independent Living Movement of disability rights advocates. 
“Budget Authority” Self-Direction provides beneficiaries and families with a flexible “budget” – a monetary allowance, which they can decide how to spend within certain rules and regulations. Began as Cash & Counseling Demonstration and Evaluation in 1998.
Budget holders may negotiate hours and hourly wage rates so long as they comply with labor law (e.g. pay at least minimum wage). The budget may also be used to purchase other goods and services, some “unorthodox” so long as these address disability-related needs.<br>

The “Cash and Counseling” Experimental Demonstration The RWJF/DHHS-sponsored demonstration and evaluation in three states, 1998-2000, followed by replication grants to 12 more states, was known as “Cash & Counseling’’. Despite being catchy and appealing, this name is misleading because program participants do not literally receive “cash” in the form of unrestricted direct payments. This is why I prefer a Spanish translation of “Presupuestos y Consejos”- it is more accurate.
States gave their programs state-specific names, such as “Independent Choices” in Arkansas, “Personal Preference” in New Jersey. My favorite is New Mexico’s “Mi Via”.
State officials worried the name “Cash & Counseling” could cause political problems with state legislators suspicious that poor people receiving unregulated cash payments would misuse them for inappropriate, possibly fraudulent purposes. They also believed that public programs should be accountable to taxpayers for how the monies were spent.<br>

Direct “Cash” Payments to HCBS Beneficiaries or Caregivers Almost Non-Existent in U.S. Unlike “cash for care” in many European countries (e.g. Italy, Austria, Germany, Spain), there are no tax-free, unrestricted payments made by check or direct deposits to beneficiaries’ personal bank accounts. 
Beneficiaries decide how to spend their funds (within some restrictions), but all financial transactions occur via an accounting service (termed a “financial management services entity” or “fiscal intermediary”). Paid for by the public program, the accounting service is a key feature of the “counseling” component of Cash & Counseling.
The accounting service carries out financial transactions according to the beneficiary’s spending plan; most importantly acting as his or her payroll agent to pay aides and ensure compliance with tax, labor and immigration laws.<br>

Employer Authority Dominant, but Budget Authority Model Gaining The “employer authority” self-direction mode remains dominant because it is older, having begun in California in 1974, and because California’s In-Home Supportive Services program is by far the largest HCBS program in the U.S., with a monthly caseload of 550,000 - 95% of whom “self-direct” their aide services. This model spread to other states (e.g. MI, WI, WA, OR, MA, PA and NY) in the 1990s.
The more expansive “budget authority” (Cash & Counseling) model began as an experiment in the late 1990s. After positive random control trial evaluation findings, it became regularly available in Medicaid via regulation starting in 2003 and further expanded in legislation enacted in 2005 and 2009.
Pre-pandemic, a national inventory estimated 1.2 million self-directing Medicaid HCBS recipients (still nearly half in California). Early results from a new inventory indicate continuing growth, especially for “budget authority”.E.g. take-up rose from 27% in 2017 to 42% in New Jersey in 2021.<br>

Paid Employment of Family Caregivers California’s In-Home Supportive Services program pioneered employment of family caregivers in the early 1970s (including spouses and parents of minor children). Initially, not all states that adopted self-directed services options allowed hiring family members (New York did not until 2012). All permit paying family now (but only 12 will pay spouses).  
Family, like non-relatives, must be legally employed in compliance with tax, labor, and immigration laws. The policy purpose is to allow family caregivers if preferred while also enabling caregivers to earn income they need and to otherwise benefit from participation in the paid labor force. 
Research indicates that paid aides who are family members provide better quality care on average compared to non-relatives.<br>

Prevalence of Family as Paid Aides Prevalence of family as paid aides varies by state and, within states, by programs targeting different populations (ages, LTC conditions).
In California’s IHSS, 70% of paid aides are relatives, of whom more than half share a household with the service recipient.
Hiring relatives is especially popular among first and second-generation Latino and Asian families. And among the elderly who prefer to employ adult children (47-59% in C&C demonstration states). Least popular among physically disabled adults under age 65. Parents are often employed to care for adult children with intellectual developmental disabilities. However, advocates have expressed some concerns that parents’ long-term dependency on caregiving income may prevent IDD children from maximizing their independence.<br>

What About Training to “Professionalize” Home Care Workers? Research indicates that HCBS recipients define “quality” of aide care primarily in terms of relationship characteristics such as compatibility, trustworthiness, attentiveness, respect, reliability, continuity. Not technical competency in performing personal care tasks – which is typically the focus of formal training.
Agency aides do receive more formal training. However, individually hired aides (family and nonrelatives) are more likely to accompany service recipients to doctor visits and be given information and instruction by doctors and nurses. State Nurse Practice Acts allow them to be trained to perform routine skilled nursing tasks. 
Self-direction allows for customized training, likely to be more useful and less costly than one-size-fits all standardized training. Counselors can help identify such needs along with funding and sources for training.<br>

Who is Eligible for Self-Directed Services? The Role of Unpaid Family Caregivers as Representatives With few exceptions, anyone eligible for HCBS can choose to self-direct his or her services under either employer or budget authority options.
However, HCBS eligible individuals who are cognitively impaired must have designated representatives to assist them or act as their surrogate decision-makers. Others may choose to name a representative even if they are not required to do so.
Representatives are typically close family or friends. They may not be paid for serving as representatives and may not be hired as paid aides. Virtually all program participants with intellectual developmental disabilities have representatives; a majority of older Americans have representatives; a minority of physically disabled adults under age 65 have representatives.<br>

Needs Assessment and Benefit Determinations Precede being Given the Option to Choose Self-Direction Prior to choosing between traditional formally organized services and the option to self-direct, all HCBS applicants receive an in-home needs assessment to determine eligibility and coverage. The assessor (who may be called a “case manager”) administers a standardized needs assessment instrument and scoring determines the benefit (e.g., authorized hours of aide service or monetary limit on spending for a range of HCBS).
Even when state benefits are generous, paid care rarely covers more than 20%-25% of hours of help with daily living tasks that beneficiaries receive.
Those who choose traditional formal supports are assigned or may be allowed to choose a case manager (who may be the assessor, but more often is someone different). Self-directing beneficiaries exercising “budget authority” get support from “counselors”.<br>

Differences Between Case-Management and Counseling Case management has historically followed a “medical model”. Case managers (usually nurses or social workers) assess functional assistance needs and develop a service plan – implicitly analogous to a physician diagnosing a patient and prescribing a treatment plan. However, identifying functional assistance needs does not require medical knowledge necessary to diagnose illness. Also, Medicaid does not allow HCBS case managers the discretionary authority given to physicians. They can authorize only the services defined and listed on each state program’s “menu” of covered services, subject to coverage limits.  
“Counseling” is a “social model” which recognizes that the purpose of HCBS is help people with functional limitations live as normally as possible, according to their perceived needs, preferences, and priorities. E.g. Not just get into and out of bed or take a bath, but on their schedule, not home care agency’s.<br>

Example: How “Cash & Counseling” Can Enable “Having a Life” vs. a Prescribed Care Plan Several years before I became the DHHS Project Officer for Cash & Counseling, I had an eye-opening experience. I accompanied a case manager on a home visit to two sisters aged 70+ who were family caregivers for their 55 year old niece who was severely disabled from birth due to cerebral palsy. Patty could not walk or talk but was very friendly and clearly loved socializing.
The sisters complained to me that past case managers had tried to get them to accept respite services, to get out of the house and leave Patty with a “sitter.” They felt condescended to and said they did not want or need respite because Patty was no burden to them. Their lives revolved around the Lion’s club, a fraternal order emphasizing service to the community that sponsored social events to raise money for good causes. They had a van in which they took Patty in her geriatric chair to club meetings where the men took Patty in their arms and danced with her which she loved. They also took Patty on trips to visit family in CA.<br>

“Having a Life” Example Continued However, the sisters had difficulty getting Patty’s geriatric chair into and out of the van. A son living nearby had helped until a health problem prevented his continuing to do so. The elderly sisters were risking injury by doing this themselves. They needed a van lift but could not afford one.
They asked me: Why won’t Medicaid give us the money they are so willing to spend on respite care that we don’t want so we can buy the van lift?
They had convinced their case manager who, shifting into “counseling” mode, had tried to advocate with the state that this would save Medicaid money on medical transportation for Patty in the longer run (Medicaid paid for ambulances to take her long distances to medical and dental appointments). The case manager was unsuccessful because this and other handicapped vehicle modifications were not “covered HCBS.” A Cash & Counseling budget could be used to buy a van lift.<br>

What “Counselors” Do to Support Self-Directing HCBS Users and Families? Help with paperwork to employ individual aides (which initially can be very daunting). Check math in spending plans to ensure a “balanced budget.”
Coach service users and families in self-direction skills. E.g. how to interview and screen applicants for aide jobs, how to write an employment contract and make their expectations clear. But counselors may not become directly involved in hiring/firing aides.
Advocate with the state, if necessary, for “non-traditional” goods and services that address legitimate needs for functional assistance and are cost-efficient and effective in doing so. E.g stackable washer/dryer for apartment so that an aide does not have to take laundry to an outside laundromat. Help brainstorm creative, if sometimes unorthodox, solutions that rely on neighborhood or community resources rather than formal HCBS providers.<br>

Self-Direction Has Several Advantages but is Not Necessarily Right for Everyone Self-directing beneficiaries may find the added responsibilities of decision-making onerous. Recruiting and managing individual aides may be especially challenging, if they do not have family, friends, or neighbors available to hire or that they wish to employ.
Worker registries are among the support services that programs can provide to help self-directing program participants identify non-relatives who are interested in working directly for those in need of aide services and their families instead of becoming home care agency employees.
Until recently, these registries were telephonic, but increasingly they are going on-line.<br>

Advantages of Self-Direction: Better Outcomes A substantial evaluation research literature resulted from the Cash & Counseling Demonstration that included a random control trial evaluation as well as from other studies of self-direction in CA and elsewhere comparing outcomes for these programs vs formally organized, professionally managed services.
On all dimensions measured (service users’ satisfaction with services and quality of life, reports of unmet need for functional assistance, adverse outcomes of poor care such as bedsores, reported stress and burden on family caregivers, cost of care, etc.) outcomes for self-directing program participants were more often better and never worse than for formally organized, professional managed services.
Moreover, reported job satisfaction (with pay and working conditions) was greater for aides hired directly by self-directing service users compared to agency-employed aides.<br>

Honoring Preferences for Family Caregiving What is the rationale for requiring family caregivers who want to provide home care to their relatives but need the income from employment to take jobs outside the home while others – usually strangers– are paid to do the job they would have preferred? Especially if hourly wage for alternative employment available to them outside the home is the same or lower.
U.S. research indicates that most unpaid family caregivers who become paid aides continue to provide additional hours of unpaid care. For non-relatives employed as paid aides to be asked or even volunteer to work additional unpaid hours violates the Fair Labor Standards Act.
Research indicates that when unpaid family caregivers reduce the total time they devote to caregiving (both when they become paid aides or when others are hired), the decrease is small, consistent with “respite”.<br>

Advantages of Self-Direction: Cost Effectiveness Administrative costs are lower when self-directing program participants recruit and supervise individual aides.
Home care agency overhead typically accounts for 40-60% of hourly rates, whereas the accounting service and counseling cost 10-20%.
Savings can be used by government to serve more individuals and allow for more generous benefits (including better pay and benefits for home care workers) for the same total cost that would otherwise be required to pay for formally organized, professionally managed HCBS.<br>

Advantages of Self-Direction: Continuity of Care Self-direction is associated with greater continuity of care, as there is considerably less turnover among aides.
Annual turnover among agency workers in the U.S. averages 60 percent! Agency aides are often absent or quit unexpectedly and agencies routinely reassign aides to other clients for convenience of scheduling and to minimize travel time between clients.
Example: A C&C program family caregiver told researchers that when her mother previously received agency services, the agency insisted on scheduling a morning aide for a minimum of four hours, 8am to 12pm. But her mother with dementia resisted getting out of bed before 10am, becoming physically and verbally combative if forced to do so. To avoid this, the agency worker sat on the couch watching TV for two hours until the mother was ready to get up. In C&C, they directly hired an ex-agency aide they liked who came on their schedule.<br>

Advantages of Self-Direction: Having Sufficient Providers Immediately to Meet Demand When public funding for HCBS first becomes available, there are typically few formal services providers. It can easily take several years for a robust network of formal services providers to emerge.
As a result, if eligible individuals must get aide services from home care agencies, there are likely to be lengthy waiting lists. Meanwhile, unpaid, experienced family caregivers already exist and likely could use the income from paid employment.
It is also easier to establish the “accounting services” that self-directed services programs require. Most states contract with only one or a limited number.
The challenge of recruiting and training local counselors is about the same – no greater – than that of recruiting adequate numbers of case managers.<br>

Contact Information Pamela Doty, Ph.D., Senior Policy Analyst
Office of Behavioral Health, Aging, and Disability Policy
Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services
200 Independence Avenue, SW, Washington D.C. 20201
Pamela.Doty@hhs.gov
+1 (571) 217-5139<br>

References and Additional Resources Benjamin, A.E. & Fennell, M.L. (2007). Eds. Health Services Research (HSR), Special Issue on Cash & Counseling Demonstration. 42 (1, Part II).
Doty, Pamela; Mahoney, Kevin J. & Sciegaj. (2010). New State Strategies to Meet Long-Term Care Needs. Health Affairs. 29:1, January: 49-56.
Dale, S.B. & Brown, R. (2006) Reducing nursing home use through consumer-directed personal care services. Medical Care, 44 (8): 760-767.
Wenzlow, A. et al. (2011). An investigation of interstate variation in Medicaid Long—Term Care Use and Expenditures in 40 States: 2006. https://aspe.hhs.gov/reports/investigation-
Borck, R et al. (2014). Interstate Variation and Progress Toward Balance in Use and Exp enditures for Long-Term Care: 2009 https://us02web.zoom.us/j/87422694009?pwd=cklxTXFUYXJQZGwxQ1c1NURQOHpNdz09
Borck, R. et al. (2016). Transitions from the community to nursing home care among older adult Medicaid enrollees: 2006-2009. https://aspe.hhs.gov/reports/transition-rates-community-nursing-home-care-among-older-adult-medicaid-enrollees-2006-2009-0<br>

References and Resources Continued https://aspe.hhs.gov/reports -- Use search terms Cash & Counseling,Consumer Direction, California In-Home Supportive Services
www.appliedselfdirection.com -- statistics, reports, technical
Bradley, V.J. , Fenton, M. & Mahoney, K.J. (2022). Self-Direction: A Revolution in Human Services<br>