COFAR blog

Guest post by Lara Dionne

As one of the parent-guardians of a young lady who is 18 years old and has Level 2 autism and moderate intellectual disability, I am very concerned about bills pending in the state Legislature to authorize Supported Decision Making (SDM) in Massachusetts (S.109 and H.201).

SDM would enable persons with developmental disabilities to sign agreements with informal teams of supporters, who would “help” them make decisions about all aspects of their care.

SDM is billed as a voluntary alternative to guardianships of those individuals, who are referred to as the “decision makers” in SDM arrangements. In reality, many proponents of SDM want to eliminate guardianships altogether.

The problem is that decision-making capacity (i.e., legal competency) should be included somewhere in S.109/H.201, and it is not. The bills need to recognize those whose disabilities render them unable to make informed, reasonable decisions in their best interest due to deficits in cognition related to developmental disability, intellectual disability, or a mental health condition which impairs sound judgement.

The legal competency issue is obvious and a blatant oversight. The bills’ proponents can’t have failed to recognize that there are some people for whom the SDM process would be entirely inappropriate. Those individuals need guardians, and in most cases, those guardians are their mothers, sisters, and daughters.

SDM will further destabilize families that are already under stress and take additional agency away from the very people the state is relying on to fill the gaping holes in their disability services infrastructure: primarily women.

SDM is a means to the end that the state appears to be seeking. In most cases, the “decision-maker” will choose the course recommended by his or her SDM “team.” That team is likely to consist of providers and Department of Developmental Services (DDS) personnel, in addition to family members.

As a result, it is likely that few “decision-makers” will choose congregate care facilities, and many may choose the lowest-cost option — their family home. Even now, well over half of adults with autism live with family caregivers, according to the Children’s Hospital of Philadelphia’s Center for Autism Research.

In case the obvious needs to be stated: It is still overwhelmingly women who take on the burden of caregiving for the disabled in the family home.

Women comprise just over 80% of stay-at-home parents. The Institute on Aging reports that 75% of all caregivers are women, and that female caregivers may spend as much as 50% more time providing care than men. Further, research completed at Drexel University found that 30% of families with a child with autism had to reduce working hours to care for their child.

Given the first two statistics, what do you suppose the likelihood is that those leaving work to provide care for autistic family members are women? Pretty darn high, I would say.

I would also love to know how many of these disabled individuals are cared for by their grandmothers because the state already burned through their parents with the weaponized incompetence that passes for disability services for this population. However, I suspect this is a set of statistics the state does not want to gather for many reasons.

My concern is that S.109/H.201 is yet another bit of health and human services legislation that claims to give autonomy to one oppressed class of individuals by taking away the autonomy of another oppressed class whose members will be expected to suffer the financial fallout and complete any labor associated with it: women.

It is worth considering the following: Is the state entitled to rely on the free labor primarily of women to fill in their programming gaps while they dismantle state-run services and outsource them to unstable private vendors? Is the state entitled to the free labor of women to care for legal adult citizens?  I do not think it is.

When most children grow to adulthood, their parents can then focus on their career and build financial security with the goal of retiring someday. Why does the state think that parents ― again, mostly mothers ― of adult children with disabilities are not entitled to that?

I was shocked to learn that, in Massachusetts, parents and guardians cannot be paid caregivers under most MassHealth programs, including adult foster care and personal care attendant services. There is currently a crisis-level shortage of professional caregivers for our disabled and elderly. Yet Massachusetts will not pay families to do the work.

Massachusetts expects that families work for free, and they are getting it. That doesn’t really give the state much incentive to fix the direct care workforce shortage, does it?  They are balancing their budgets on the backs of women.

There is proposed legislation this session — S. 775/H. 1232, An Act Relative to Family Members Serving as Caregivers — to undo this overtly exploitative practice of relying on unpaid, mostly female, caregivers in adult long-term care. The bill would allow legally liable individuals, parents and guardians, to be paid caregivers for their adult children under MassHealth programs.

According to Massachusetts regulation (101 CMR 420.00), which governs reimbursement for Adult Long-term Residential (ALTR) Services, the state pays a group home provider over $200,000 a year on average for adult residential services for an individual with autism and intellectual disability.  It would seem humane to allow mothers (or other family members) providing the same care to receive a fraction of that $200,000, equal to a living wage.

To elaborate further on the lack of basic human decency extended to unpaid female caregivers of children with disabilities, employees in a group home setting have their employment governed by U.S. labor laws. Depending on the number of employees in their parent company, they may receive health insurance and family medical leave. They may get work credit toward future social security benefits.  Many companies that provide group home services give their employees paid time off and overtime pay.

Most importantly, group home employees are able to go home and rest at the end of a shift, away from the demands of their charges. Mom gets none of those things. Her shift never ends. Where was the Department of Labor when mothers were being written out of these MassHealth caregiving programs? Why is the caregiving labor of family members ― again, primarily women ― not seen as labor while someone else does it for pay?

Women who have children with significant disabilities have often been out of the paid full-time workforce for years by the time their child reaches adulthood. It seems that keeping individuals with disabilities and their caregivers in poverty is an intentional feature of most government programs. The poor have no voice. The poor are too busy surviving to object to the violation of their civil rights. The poor become invisible.

When we closed the doors of many institutions, the level of support needed by disabled individuals with more profound disabilities did not decrease or cease to exist. Yet the state assumes that the mystical powers of motherhood will somehow miraculously accomplish what it used to take teams of paid professionals to do.

I urge you all to find and read the excellent article in The Boston Globe last month on abuse and neglect occurring in residential schools for children with autism and intellectual disability. Some people who are being paid, albeit inadequately, to do this labor are resorting to abusing clients.

When an excuse is offered for such egregious violations, it usually mentions the stresses of the job, staff turnover, and chronic understaffing. Still, these employees do have the supports and protections mentioned earlier.

Yet the burden on family caregivers ― primarily mothers ― is inordinately higher and there is no compensation involved. Mothers are expected to endure all that the inadequately compensated direct care workforce endures, and they are expected to do it alone, or while impoverishing themselves to qualify for any state support for their child.

Why is it not expected that this is going to result in domestic violence and child abuse? That would seem logical given what is happening in the paid disability services workforce. It is that mystical power of motherhood again, isn’t it?

The assumption of the right to the free labor of women doing work they cannot possibly do alone, given the lack of available state resources and, in many cases, the level of their child’s disability, is not only misogynistic, it is ableist. Yet SDM is designed to further support the push toward privatization and reliance on “natural supports” when this system can clearly be seen to be failing those with more profound disabilities.

SDM will place additional labor burdens on female caregivers, as well. The guardianship process is onerous enough, as it should be, given its gravity. However, once guardianship is approved, a legal guardian can provide caregiving services without needing to consult a team of people who may be difficult to assemble. It is hard enough for women to take time away from primary caregiving and a job and household demands to perform necessary legal and financial tasks for their adult children with disabilities.

Many of these tasks involve multiple calls, meetings, paperwork, and errands. For example: Has anyone had to apply for SSI on behalf of their adult child? Acquiring a state I.D. for documentation purposes, applying to be their representative payee (because guardianship isn’t enough to represent them with the Social Security Administration), and opening a representative payee bank account are quite a bit of work. Now imagine doing it in committee.

The adult child is not going to be able to perform this labor themselves. I also tend to doubt that their SDM team is going to do much of this work, if the disabled adult lives with family. It will be Mom or Grandma doing it with everyone on the team getting to tell them how to do their job.

Poor, working, and middle-class women will be unable to buy their way out of the caregiving responsibilities that will continue to be forced on them by SDM. The unpaid labor expectations and the micromanagement by a team of individuals, who will have interests and agendas that conflict with the health of the entire family unit, will push many female caregivers beyond their breaking point.

The state knows this, but the state also knows it has mothers over a barrel. At every stage in the life journey of your disabled child, mothers are expected to make a choice: Choose to sacrifice yourself or choose to potentially sacrifice your child’s health and future.

There is never a choice that considers the inherent worth and civil rights of both individuals. It is never mother AND child in disability law. It is solely focused on the child, but it depends upon ― it assumes the right to enlist― the mother’s labor in a manner that sacrifices her health, her career, and her financial independence.

Disability law creates dependency in female caregivers that leaves them vulnerable to poverty and abuse.  It removes their agency. The SDM legislation (S.109/H.201) is merely the latest incarnation of disability law continuing that pattern.

It is morally wrong to rely on the lifelong free labor of a particular class of people — based on their sex — to save money and shirk social responsibility. This assumption of the right to the free labor of women bars many women from equal access to educational advancement, civic involvement, and financial security and independence.

Disempowering women further disempowers adults with profound autism and intellectual disability. Many of these adults cannot advocate for themselves. Women ― mothers ― are their voices. If the mothers of the profoundly disabled have no access to the power structure in our society, their children have no voice within that power structure. Their children’s needs go unanswered.

The desire to be able to earn a living wage, to prepare for a somewhat secure retirement, and to protect our physical and mental health does not mean that we women do not love our children and grandchildren. It means that we are people with rights to be considered too.

You can’t give freedoms to one class of people that rely on the continued oppression of another.

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Lara Dionne is a COFAR member and is currently attending Salem State University, working on a Certificate in Data Analytics, with the long-term goal of getting back into the workforce after many years of caregiving for both her daughter and elderly relatives.  She looks forward to being paid for her labors, again.