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.
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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.”
I agree.
This is from an article in Disability Scoop, "Disability Spending Drops for the First Time in Years" by Michelle Diament, 7/22/13, based on the 2013 State of the States in Developmental Disabilities, a report from the University of Colorado:
- "Overall government spending on people with intellectual and developmental disabilities for 2011 — the most recent year for which data is available — was $56.65 billion, the report found.
- "Of the funding distributed nationwide that year, about 20 percent went toward programs providing family supports, employment services, personal assistance and similar aid.
- "Almost 60 percent went toward residential settings for six or fewer people while 5 percent funded living environments with seven to 15 residents. State-run institutions with 16 or more residents received 11.5 percent of total spending and 3 percent went to institutions that were privately run.
- "Nearly 80 percent of government spending on people with intellectual and developmental disabilities was funneled through the Medicaid program in 2011, the report found. Other funding came from the states and federal programs like Social Security."
More information on the State of the States Report was presented here in a Webinar on Feb. 27, 2013, hosted by the American Association on Intellectual and Developmental Disabilities (AAIDD).
The presentation shows some disturbing trends:
"Current Trend: Support Services Waivers Characterized By:
- "A low dollar cap on the total amount of HCBS Waiver services authorized for each beneficiary
- "Flexibility in the selection of services within the dollar cap
- "Expectation that unpaid family caregivers will provide significant support to Waiver participants [emphasis added]"
"An Estimated 853 Thousand Persons with I/DD Live at Home with Aging Caregivers"
Intellectual and Developmental Disability (I/DD) spending per $1,000 of state aggregate personal income, shows that Michigan ranks 26th at $3.75, a reduction in spending of 0.2%
In addition is this from another 2013 report from UCP, "The Case for Inclusion":
"Waiting lists for residential and community services are high and show the unmet need. More than a quarter of a million people (268,000) are on a waiting list for Home and Community Based Services. This would require a daunting 44% increase in states' HCBS programs! However, 20 states report no waiting list or a small waiting list (requiring less than 10% program growth). This measure has gotten much worse over the life of the Case for Inclusion. Since the 2007 Ranking, the size of the waiting list nationally has almost doubled from 138,000 to 268,000."
In Summary: Less money is being spent on people with DD. Waiting lists for services have almost doubled since 2007. 853,000 people with DD live at home with aging parents. The expectation is that unpaid family caregivers will provide "significant support" to waiver recipients. And there don't appear to be any plans to relieve the burden on families by expanding residential options for people with DD.
I read reports, so you don't have to and this one is a doozy: "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities".
The Supporting Families report came out of a conference held in March 2011 in Racine, Wisconsin. The conference was sponsored by the federal Administration on Developmental Disabilities (ADD) [now called the Administration on Intellectual and Developmental Disabilities (AIDD)]. Almost all the participants (see page 24 of the report) were professional advocates from programs and advocacy organizations funded, at least in part, by the federal Developmental Disabilities Act and administered by the ADD. Many of the participants are also identified as parents of children or adults with DD, but they attended the conference as representatives of their programs or organizations.
Like many ideas coming from advocacy groups for people with developmental disabilities, the idea of Supporting Families is a good one. When one looks deeper, however, and considers the report's recommendations and how they might be applied in the real world, "Supporting Families" proves to be, at best, lacking in common sense and, at worst, potentially harmful to the people the participating advocates claim to want to help.
The Supporting Families report establishes that families do, indeed, need help:
(from Page 4) "Today there are more than 4.7 million citizens with intellectual and developmental disabilities in the United States. More than 75% of those living in their communities without formal disability services and relying on their families for varying levels of support. [emphasis added] Of the 25% receiving services, over 56% live with their families; in some states, the figure is as high as 80%. For many families, the support provided neither is short term nor does it end when the family member turns eighteen years old".
(from Page 5) "Families often are faced with emotional, social, physical and economic demands that they may not have experienced had their child not been diagnosed with a disability.
- Twenty-eight percent of children with disabilities live below federal poverty levels as compared with 16% of children without disabilities.
- Parents of children with disabilities have lower rates of, and diminished opportunities for, employment and advancement than parents of children without disabilities.
- Over 58% of parents/caregivers spend more than 40 hours per week providing support for their loved one with I/DD beyond typical care. 40% spend more than 80 hours a week. [emphasis added]
- Long waiting lists for services and the increased lifespan of individuals withI/DD have contributed to a growing number of individuals with I/DD households where the primary caregivers are themselves aging."
Several things bear repeating before going on: 75% of people with DD receive no "formal" (read paid) services. 58% of family caregivers spend more than 40 hours per week, the equivalent of a full time job, caring for their family member and 40% spend more than 80 hours, the equivalent of two full-time jobs, caring for their family member.
As a parent who cared for one or the other or both of my two sons with severe intellectual and developmental disabilities at home for 28 years, I know enough about the difficulties that families face to know that the report and its recommendations coming out of the conference on Supporting Families is not the report I would have written. There is useful information to be extracted from from the report, however, and it reveals a great deal about how policy becomes twisted to serve interests other than those of people with disabilities.
Given the set of facts about families presented in the report, it appears to me that the first step in easing the burden placed on families by an inadequate system of care and services would be to increase services available and appropriate to the individual with DD. In addition, respite services that give families a break from care giving could be combined with expanded recreational and social activities for the DD family member giving the person with DD a much needed opportunity to have a life outside of the family home. Competent paid caregivers that come into the home to relieve families of constant care are also needed for both the family and the person with DD. These types of services go a long way toward keeping families together and reducing costs over the long term by delaying the need for residential placement outside the family home.
There are always situations where it is better for the welfare of the individual with DD and the family to have the option for the person with DD to reside outside the family home in a safe setting that provides services appropriate to the needs of the individual. We need to be especially cognizant, however, of people with DD who do not have families or whose aging parents no longer have the energy, ability, or will to care for another adult. We need to make sure that these individuals have the same rights and protections from harm that are are afforded people who are fortunate enough to have close and engaged family and friends who know and care what happens to them. It is often the case that people with DD with close connections to family and friends have their rights upheld and respected because a devoted family member or friend fought for them.
It is likely that providing appropriate services to the person with DD and expanding direct services to families such as respite care combined other activities for the person with DD may require an increase in funding from federal and state governments, but perhaps not as much as some policy makers fear. Families who have cared for loved ones with DD into their adult years are realistic about the effort and time that goes into caring for a person with severe disabilities and are least likely to squander resources on frivolous expenditures. In my experience, when families get together to fill gaps in the system of services that are lacking in their communities, they are extremely resourceful and marshal community resources that local service agencies are not able to do alone. Of course this means listening to families, respecting their expertise, and allowing them to do what they do best, which is acting as check on a dysfunctional system of services to make it work better for their DD family members.
That's my two cents. There's not much new or original here. It just makes sense in helping both people with developmental disabilities and their families to make the dysfunctional system of care and services work better. Now, what is it exactly that the advocates participating in the Supporting Families conference would do or not do to help families?
One thing is clear. The Supporting Families advocates are not about to stick their necks out and push for any increases in funding to directly provide services to families or to people with DD living at home. With the big push toward deinstitutionalization, which DD Act programs have supported wholeheartedly, the report acknowledges that as supports have shifted to community settings, (page 5) "the demand for long-term supports continues to increase and funding continues to be severely limited. This is further enhanced as the aging of the baby boom generation brings with it an increased need for public resources… These pressures, combined with a weak economy and large federal budget deficits require that developmental disability service systems transform the way they provide services and support. These changes include first recognizing the key role of the family as a primary [and mostly unpaid] source of support and for naming the source of day to day caregiving, and, second, supporting the capacity of the family members to provide needed assistance when necessary over time. Supports to the family unit must be a fundamental consideration in budgetary and long-term care policy as our nation moves forward."
The Supporting Families crew has opted to accept rather than challenge the idea that national economic conditions will inevitably result in fewer services and options for people with DD and their families and that families might as well get used to doing more with less. Where the Supporting Families advocates are willing to help is in supporting the capacity of families to do more with less.
stay tuned for more...
These are clips from hearings in the Washington State House Early Learning & Human Services Committee. The parents testifying have gone without services for their severely disabled children for years.
Because We Care - Beyond Inclusion is a Washington State blog that advocates for a full continuum of care for people with intellectual disabilities and their families.
Because We Care supports HB 1546, a bill before the Washington State legislature that would address some of the needs of 16,000 plus developmentally disabled clients who are eligible for services but do not receive any. They are called the "no paid services" case load.
Among other things, the bill would make available funding to provide respite services for 4,000 people for the fiscal years 2014 and 2015.
Many families who already have respite funding have difficulty finding providers who are reliable, competent, and willing to work for low pay. This blog post urges the DD system in Washington State to look beyond in-home care and consider the possibility of using specialized programs for people with DD already in place in schools, recreation departments, county park systems, and other center-based programs:
"By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability, have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care."
This sounds good to me, but it is bucking the trend pushed by full inclusion advocates to eliminate disability-only services. The blog post has an answer for that: "Without respite our families are becoming socially excluded – isolated from community. This is not what the inclusion movement was intended to do but it has become the reality for many families."
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| Natural Supports |
"Natural Supports" is the name given to unpaid care giving provided by a disabled person's family and friends. Unpaid caregivers should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should also be acknowledged for their important contribution to the overall support system for people with disabilities. But let's not glorify the virtues of Natural Supports as a way to avoid facing gaps in the system of care and the lack of paid services and residential options for people with developmental disabilities.
VOR, a national organization that supports a full array of residential and service options for people with intellectual and developmental disabilities, addresses these issues in its November 16, 2012 newsletter in an article called "The Growing Burden on Caregivers: A Focus on Natural Supports".
According to the article:
"In this difficult economy, policymakers are quite tempted to support and expand free natural supports. Some advocates leverage this temptation and oversell the virtues of natural supports while also seeking closure of specialized residential (large and small), supported employment, and other services…However, how “natural” is it for a middle aged person to be living with, and supported by, elderly parents? There are an unprecedented number of families in exactly that situation, arguably due to aggressive efforts over the years to dismantle specialized services and unreasonable pressure by advocates and states on families to take on caregiving ("natural support") duties in the family home…."
VOR concludes:
"..if a family has access to adequate natural supports and chooses this arrangement over specialized supports, VOR supports it. However, consistent with our mission in support of high quality care and human rights for all people with intellectual and developmental disabilities, natural supports should not be imposed on families when doing so creates an impossible burden on too few people to the detriment the individual’s and the family’s mental, physical and financial health, and indeed, risks separating the family unit itself."
The VOR newsletter gives some perspective on this issue and links to other articles and more information. This is a good place to begin examining an approach to serving people with DD that has many families wondering why public agencies that are supposed to be helping them are so intent on handing over more and more care giving responsibilities to the family."
A report on natural supports called "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities" came out of the Wingspread Family Support Summit, 3/6/11-3/8/11, in Racine, Wisconsin. Professional advocates, mostly from programs funded by the federal Developmental Disabilities Act, put their heads together and figured out how to get more funding for their organizations by enhancing the capacity of parents and other family members to be more accepting of their fate as caregivers and the prospect of making do with less for the foreseeable future. More about this later.
What do families really think about "Natural Supports"? A family group in Colorado surveyed 500 family members to find out. The results are here.
