When Mom Can’t Work: Supporting Mothers Who Care for Children with Disabilities
Susannah is a mother of three, the youngest of whom has both Charge Syndrome and Lennox-Gastaut Syndrome. In this piece Susannah details how our country has historically institutionalized individuals with disabilities, and what must be done to keep children out of these places and at home with their families. At the center of her argument, Susannah recommends allowing parents of children with disabilities to be paid to be their child’s caregiver—a measure that has been temporarily authorized in her home state of Virginia, but is set to phase out in April 2022. You can read more of Susannah’s writing at her blog, The Girl in Charge.
Editing credential to Bethany Bartholemew.
I’m glad there is much talk in the world today about the need for a national paid leave plan, and other measures to support parents. But there is a unique circumstance that many parents of children with disabilities are currently facing that is not getting national attention. For many parents, their children’s caretaking needs prevent them from getting a job in the first place.
I am one of those parents.
My youngest daughter, Isabelle, is 10 years old, and she has Charge Syndrome, which includes multi-sensory impairment, such as blindness and deafness, as well as overall cognitive developmental delay. She also has Lennox-Gastaut Syndrome, which is a very rare and very severe form of childhood epilepsy involving multiple types of seizures that are extremely difficult to treat. In all documented cases, the frequency and severity of seizures actively worsens the cognitive and behavioral problems of the child as they get older.
When my first child was born in 2006, I chose to become a stay-at-home mom. I intended to go back to work after my last child started kindergarten, but I never anticipated that she would be born with severe disabilities. The emotional and physical toll of Isabelle’s care delayed my plans, but I did take a job as a substitute teacher in 2017 when she was in first grade. However, that was the year her epilepsy started manifesting itself, causing her to miss school unexpectedly, which rendered me just about the least reliable substitute teacher my school district had likely seen. My daughter had a full-time Medicaid funded respite worker who may have helped, but our respite worker was scheduled to work evenings, not days, and had other obligations that prevented her from dropping everything to care for my daughter so that I could work.
During those years when I thought I’d be working again but wasn’t, I often wished that the Virginia Medicaid Waiver allowed me to be my own child’s paid caregiver. This would have allowed me to make an income while I was at home to care for my daughter—which is where I was anyway—because despite having a full-time respite worker in place, my daughter’s medical needs were so unpredictable they still prevented me from being even part-time employed.
But I recognize I am in a privileged position. I have a spouse with reliable employment which allows me to make the choice to stay home. But what about parents who don’t have a steady income to rely on? How are they to care for their vulnerable child? Their children are the population that are most at-risk of being institutionalized.
Yes, you read that right. Unbeknownst to many, there are still institutions for children with disabilities open in America.
Created in the 1800s as sites of education and healing, institutions for people with developmental disabilities and mental illness deteriorated over the decades into places of neglect and abandonment. Many children lived their whole lives in these facilities, never knowing the love of a family, and living in daily fear of their overworked, underpaid, and often abusive caretakers. Visits from family members were discouraged and, at times, outright denied. There was little oversight, and what went on inside the institutions became shrouded in secrecy.
It took decades of exhausting and relentless advocacy by parent groups and other organizations to get Congress to pass legislation that protected the rights of children with disabilities. In the 1980s, thanks to the Katie Beckett Medicaid Waiver and other legislation, parents were finally given the choice to keep their children at home and seek newly established community services for their support, rather than place them in state-run facilities. More and more of these institutions began to close, a process that is still ongoing today.
In 1999, the United States Supreme Court said in a decision called Olmstead v. L.C. that persons with disabilities who live in, are “at risk” of living in, or are eligible for placement in facilities or institutions have a right to live in the community. The court said that, under the Americans with Disabiltities Act, which was signed into law in 1990, “it is a form of discrimination to isolate and segregate persons in institutions when they can live like other people in the community and enjoy the benefits of society.” In 2009, the Department of Justice Civil Rights Division launched an aggressive effort to enforce Olmstead, expanding the understanding of its obligations from getting people out of institutions to assisting people to engage in community life.
But the work is not done. There are still those in positions of power who believe that people with disabilities belong in institutions, and because not all institutions have been closed, there is a ready system still waiting to absorb this population back into the clenches of the hell that advocates have worked for decades to extricate them from.
One important factor that continues to make this population vulnerable to re-institutionalization is the financial burden that families of children with disabilities carry. It’s one thing for the Supreme Court to rule that children with disabilities have the right to live in their homes, but it’s another thing for those parents to be able to afford to take care of their children.
The expense of caring for a child with disabilities includes medical supplies, adaptive equipment, accessible architectural features in their homes, and the need for adequate insurance coverage for therapy and medical bills. My daughter’s medication alone would cost us several thousand dollars a month if she didn’t have insurance. There are state-funded services in place already that assist with many of these things (although much could be said about the web of bureaucracy that parents have to navigate in order to gain access to these services), but one of the most burdensome factors that families face is the need for daily care.
Feeding, toileting, bathing, and dressing are all aspects of my daughter’s life that she cannot perform for herself, and there is little prospect that she will ever be able to do so. In addition to this, as a non-verbal, non-signing child, Isabelle has a very difficult time communicating clearly what she needs, and at times she lashes out physically. She’s been known to scratch, bite, kick, and pull hair when she’s frustrated, and I fear that the day will come when I will no longer be able to find somebody who is willing to take care of her.
It takes long hours of searching and vetting and interviewing to find the right person to care for a medically fragile child—especially to find someone who feels passionately enough about working with this population to be willing to work for such a low wage, when they know they could go down the street and get a job at Target making $5 more an hour. Additionally, under the current system in Virginia, if Medicaid Waiver respite services are not used within a 30-day period, those services are lost and must be reapplied for (a lengthy process), which can force parents who are trying to maintain employment outside of the home to rush the process and to potentially put their child at risk by hiring someone they may not trust out of fear of losing the service. This burden would be lifted if parents knew they could simply be paid themselves until the right person for the job was found.
There seems to be a prevailing attitude amongst lawmakers that parents shouldn’t get paid to care for their own children, not when that’s “exactly what they signed up for” when they chose to have a child. But I would argue that no parent signs up to have a child with disabilities, and if the state is going to pay someone to care for that child anyway, it should be possible for that person to be the child’s parent . This is especially important when we recognize that children without disabilities will someday grow up and become self-sufficient, but children with physical and cognitive limitations as severe as my daughter’s never will. My job as her caretaker has no predictable end date.
I was thrilled this past year when the federal government authorized COVID-19 Medicaid flexibilities through Appendix K, which included an allowance for parents of minors with disabilities to be their child’s paid caregivers. This change has made all the difference for my family financially. Despite the wage being markedly lower than what I could be earning elsewhere, the extra money I have been able to earn has significantly reduced the financial burden my family carries.
But this temporary measure is scheduled to expire in April 2022. We must make it permanent, and we must make it a nationwide Medicaid Waiver policy so that individual states cannot take it away. It makes no difference to Virginia’s state budget if a hired caregiver is getting paid for my daughter’s approved Medicaid Waiver hours or if I’m getting paid for those hours. But this policy change would give families like mine choices. It would allow us to make the choice that best fits our family’s needs and circumstances as they vary from year to year.
We cannot allow these children to fall through the cracks and end up back in institutions because their parents can’t afford to keep them at home. If the DOJ has indeed expanded the understanding of Olmstead v. L.C. from getting people out of institutions to assisting people to remain in their own homes, then allowing parents to be their own child’s paid caregiver must be a part of that assistance. For some parents, it is the only way for them to earn a wage and still care for their vulnerable child. It is the only way to keep their child at home where they have the right to be.