Geoffrey McGee, J.D. Candidate at Harvard Law School, Summer 2021 Legal Intern with GBLS’ Children’s Disability Project.
When I began my summer internship with the GBLS’ Children’s Disability Project (CDP), I didn’t know what a dedicated account was. Without a lot of background knowledge, I probably would have assumed that any child with a disability who qualifies for benefits from Social Security would have easy access to that money. Sadly, this is not the case. This summer, I was shocked to learn that federal law and regulations around the children’s dedicated bank accounts make it prohibitively difficult for parents of children with disabilities to spend money that belongs to their children, even on things that the child desperately needs. The victims of this rule are the children with disabilities and their families who cannot access money that is rightfully theirs. This is a complete miscarriage of justice which disproportionately impacts low-income families and families of color.
My work on dedicated accounts with CDP began when I was introduced to two families, whom I’ll call the “A” family and the “B” family. The children in both families are disabled (not all kids who are disabled get SSI) and receive monthly Supplemental Security Income (SSI) payments from Social Security. The “A” family includes a son who has been diagnosed with numerous physical disabilities including obesity. They had recently moved and could not afford to buy furniture for the child’s room. As a result, he was sleeping on a broken bed with an uncomfortable mattress and no storage space for his clothes. This child has several serious impairments including a neurological condition, developmental delays and ADHD. He benefits from having space to organize his clothes and school supplies; but with his bedroom empty, he had no way to organize any of his belongings.
The “B” family includes a daughter diagnosed with a variety of conditions including sickle cell disease and anxiety. Her treating sources identified therapeutic horseback riding as an effective treatment for her ailments. This sport was especially suited to her because her sickle cell disease puts her at risk of serious illness or infection when she comes into close contact with other people, especially while playing sports. The horseback riding lessons were one of the only activities she could safely do to counteract the extreme isolation she felt on a daily basis. Her mother, for lack of a better alternative, and desperate to have a therapeutic outlet for her daughter, had been charging the horseback riding lessons to her credit card, and struggled to pay off the debt. At one point, the daughter, despite her medical issues, offered to do unpaid labor for the horseback riding company just so she could continue having her lessons.
At this point, you may be wondering: if these children receive monthly benefits, meant for their care and well-being, why don’t the parents use those funds for necessary purchases? The monthly SSI payments are designed to meet the child’s basic needs, and are never more than $800 per month for the child. The monthly SSI checks simply are not enough cover these big purchases. Furthermore, SSI rules prevent parents from saving their monthly checks for long periods of time, so these checks always go toward daily needs for the children instead of toward big purchases like a new bed or therapeutic horseback riding.
However, both families had additional benefit money stored away in an SSA required separate “dedicated account,” a bank account with the child’s name on it that is governed by strict rules and regulations. If families file for SSI benefits on behalf of their children, and the application takes a while to be approved, the children are owed backpay from the month that they filed for benefits until it’s granted. Due to multiple appeals and delays in the system, these awards can often be many thousands of dollars. Both the “A” family and the “B” family had enough money in their dedicated accounts to cover the purchases they needed to make. However, unlike the monthly SSI checks, money in dedicated accounts can only be used for select purposes, including medical treatment, job training, education, and other unspecified disability related costs. If families spend this money for other purposes, they can be accused of “misappropriating” their children’s money, which means they would have to pay that money back and lose it for good. The bottom line for these families is that they were afraid to use their dedicated accounts to make purchases for their children, even though those accounts were supposedly set up for the benefit of their kids.
It is important to note that these restrictions only exist for children. If the kids were each just a few years older, they would have had the money given to them directly, and they would have no trouble accessing it; but, solely because they are not 18, they are totally denied access to their money. Even though the families had dedicated accounts, they were afraid to draw money from them and risk penalties and loss of benefits. The “A” family told CDP that they would rather go to Walmart to buy their son the cheapest bed they could find. They thought about using a “lay away” plan, making small payments each month until it was paid off. The “B” family was worried that the therapeutic horseback riding lessons would not be seen as a medical expense and decided that it would be safest to pay for the lessons out of pocket. And so, neither family was using the money that was sitting in a bank account with their child’s name on it, even though both children desperately needed these purchases to be made.
I was outraged to hear of these stories. These families had more than $2500 each sitting in a bank account allegedly earmarked for their children, but the restrictions that were placed on their money made them fearful of spending any of it. Both families were actually made worse off because of the way the benefit laws are written, the same laws that are supposed to help families provide for their kids. Moreover, these were families of color struggling to provide for their children during the COVID-19 pandemic, the worst public health crisis of our lifetimes. During such a precarious time for everybody, people from marginalized communities have felt the disproportionate impact of these punitive, ill-conceived, and unnecessary laws. The idea that these families would lose access to the money they needed was deeply saddening to me, and I resolved to do whatever it took to get them permission to spend money from their dedicated accounts.
In both cases, freeing up the money in the dedicated accounts meant going through the Social Security Administration (SSA). The SSA is a massive governmental agency with field offices all across the country. Navigating SSA can feel intimidating even as a law student, so I understood why my clients felt like the system was hard to work with. For both cases, I worked full-time for several days to put together a compelling case. For the “A” family, I made a budget of all of the furniture that was needed, along with a detailed letter explaining how the purchases related to the child’s disabilities. For the “B” family, I gathered medical evidence, including from the child’s doctor, in support of the horseback riding as a therapeutic intervention. I also gathered the family’s financial records together to show the Social Security offices exactly how much money had been spent on the lessons. Many of the resources I used to gather this evidence together (computers, computer software, fax machines, and scanners), although seemingly simple, are not tools that people living in poverty have readily available to them. Without legal assistance, many families reach a roadblock at some stage of this process. Additionally, many parents of SSI recipients, including the mothers in both of these families, work full-time, which makes them unable to spend their working hours calling SSA as frequently as CDP’s advocates can.
Because the two families lived in different areas of the state served by different Social Security offices, their stories diverge from this point. After one letter and a few phone calls that I made to SSA, the “A” family had their request approved within only a few days, which pleasantly surprised all of us. This family, who agonized over trying to buy a bed for their son, suddenly had funds to furnish their son’s new room. Not only would the new bed help alleviate the symptoms of his physical disabilities, but the new furniture would help him organize his clothes and school supplies. One week was enough to change this young man’s life for the better. The mother’s joy was clear when she spoke to me. A massive weight had been lifted off her shoulders when she knew that she could buy durable, stable furniture and make her son feel more at home.
The “B” family was not quite as fortunate in dealing with the Social Security field office. Although that office had dedicated claims representatives working to approve requests as fast as they could, budget cuts meant that the office was severely understaffed, and we were told the claim could take up to a month to get processed. I found myself on the phone with this office almost daily, checking to see if the request had been received and processed. When more information was requested, I made sure to send it as fast as possible. After several persistent phone calls, one day the mother finally received a mailed notice from Social Security informing her that the request had been approved a few weeks after the request was first made. Thousands of dollars, which had been sitting in the dedicated account unused, could now be used to reimburse this family for the money they spent out of pocket on the therapeutic horseback riding lessons. The mother, who had gone into serious credit card debt to pay for her daughter’s care, no longer had to choose between these lessons and her financial stability.
I felt grateful at the end of this process for all of the Social Security officers who made these victories possible, and I felt grateful to have had the chance to work with such hard-working, loving families. But I also felt angry. Budget cuts and bureaucracy at Social Security mean that clients without lawyers have to wait much longer for their requests to be approved; and because lawyers can’t claim fees for these kinds of cases, hardly any families can afford to hire one. The result is that families who are already low-income, who are disproportionately families of color, have money earmarked for their children’s well-being that might never actually be spent. Thousands of families could one day receive relief from the stressors of poverty if the dedicated account rules change. The handful of victories I had this summer were wonderful, but they could never compare to what real, systemic change would do for working families in this country. Until the laws change, I will leave CDP and GBLS with a clear message for anyone who will listen: dedicated accounts must be abolished. Children with disabilities need access to the money to which they are entitled. A step toward ending child poverty and easing wealth inequality is staring us in the face. All we have to do now is change the law.
The Children's Disability Project of Greater Boston Legal Services 