Justice in aging is a non-profit organization “fighting Senior Poverty through Law”. The focus of the organization on seniors necessarily overlaps with issues dealing with disability and poverty.
This Issue Brief from Justice in Aging, “Voluntary Means Voluntary: Coordinating Medicaid HCBS with Family Assistance” by Eric Carlson, May 2016, discusses the use of “natural supports” in caring for and providing unpaid services to people who receive Medicaid-funded Home and Community-Based Services (HCBS). Although the emphasis here is on seniors receiving HCBS, it applies equally to people with developmental disabilities.
According to the report (p.2), the unpaid caregiving that families provide to people with disabilities are of major significance in the system of care and services: “…Annually in the United States, about 40 million family caregivers provide an estimated 37 billion hours of care. This unpaid assistance is valued at $470 billion."
The 2014 HCBS Rule from the federal Centers for Medicare and Medicaid Services clearly states that when unpaid “natural supports” are included in a person-centered plan, those services are voluntary. This is from §441.725(b)(5) of the rule that applies to "state plan" Person-centered plans. The same wording applies to services for people covered by various Medicaid waivers. The plan must “Reflect the services and supports (paid and unpaid) that will assist the individual to achieve identified goals, and the providers of those services and supports, including natural supports. Natural supports are unpaid supports that are provided voluntarily to the individual in lieu of State plan HCBS.” [emphasis added]
In many states, Medicaid policy in fact compels family members to provide “natural supports” by limiting the number of service hours available to the beneficiary. These limitations have been based on the state's definition of Medical Necessity that, in Florida, for instance, “denies Medicaid-funded services to the extent that those services are provided for caregiver convenience”. The Policy Brief cites numerous hearing decisions that have denied extending hours that the individual needed for care based on the idea that these hours were needed merely for the “convenience” of the caregiver, such as when the caregiver had to hold down a job in addition to their caregiving responsibilities at home.
[The report also notes that “Medicaid’s voluntariness requirement does not lessen any state-law legal obligation that a parent has to care for a Medicaid-eligible minor child, or that one spouse may have to care for the other.”]
These State definitions of Medical Necessity are clearly in conflict with federal regulations and they have been challenged successfully in some cases cited in the report. Ten other states have rules similar to Florida: Iowa, Kentucky, Maryland, Mississippi, Nebraska, New Hampshire, New Mexico, North Dakota, Tennessee, and Wisconsin.
Fortunately, Michigan’s Medical Necessity definition does not include any reference to reducing paid services based on the “convenience” of the caregiver. Unfortunately, families who are providing natural supports often feel coerced into providing or paying for services that should be covered by HCBS and delivered through Community Mental Health agencies. Families are often not informed that "natural supports" are voluntary or they have been threatened with their loved-one losing services, if they do not go along with the plan that CMH wants them to agree to. Other factors include threats to change the way services are delivered in ways that the family feels would be harmful or inappropriate for their disabled family member.
Here is one example from the report (p. 5) that shows what I consider to be the cruelty of public agencies finding excuses in Medicaid law to deny services to people who desperately need them:
Personal Care Hours Denied, Forcing 78 Year-Old Mother/Caregiver to Provide Additional Assistance
David, a 60 year-old man, was diagnosed with multiple sclerosis in 1991. He became quadriplegic and required complete assistance with all activities of daily living. He used a bladder catheter and wore diapers. He transferred from his bed to a motorized wheelchair with the use of a Hoyer lift, and required assistance to operate the chair.
David lived alone, although his 78 year-old mother lived in a separate but adjacent residence. She had breathing problems and required oxygen on a regular basis.
Given David’s significant needs, he had been authorized for around-the-clock Medicaid personal care services (including homemaker services and companion care). He also was authorized for seven hours weekly of skilled nursing services, in order to provide catheter care and set up medications.
Based on a computerized recommendation, David’s managed care organization reduced his personal care authorization from 168 hours weekly (around-the-clock coverage) to 51 hours. An appeal was filed on David’s behalf, arguing that he could not request help in case of an emergency, and had a history of going into a coma-like state when suffering urinary tract infections. The appeal request cited evidence that David had fared poorly in a nursing facility, and had improved significantly after being supported with adequate services at home.
In justifying the reduction, the MCO claimed that weekly service hours exceeding 51 hours were for the convenience of the mother. The hearing officer, however, rejected this claim, finding that the evidence did not support the requested reduction. The hearing officer noted that the MCO was requesting roughly a 70% decrease in personal care hours (117 ÷ 168 = 69.6%), and cited David’s care needs and the mother’s own health limitations.
Among the observations and recommendations coming from the report are these:
“…No family assistance can be truly voluntary if it is needed to compensate for reduction or termination of a Medicaid-funded service.”
“Definitions and service authorization procedures should clearly establish that a family’s personal care services are only to be taken into account if the family member is legally obligated to provide those services, or the family member has volunteered. Also, to honor the concept of voluntariness, a volunteering family member must have the ability to change his or her mind, if for whatever reason the family member no longer wishes to perform the services in question.”