Grandparents Raising Grandchildren Project

Audrey Shreve, GBLS Law Student Intern with the Children’s Disability Project, Northeastern University School of Law, Class of 2023

As an intern with the Children’s Disability Project (CDP) at Greater Boston Legal Services this spring, I took a deep dive into Social Security work. Through my internship, my goal was to ensure that my clients could do what any loving parent wants to be able to do – take care of their children.

I interviewed clients about their children’s disabilities, drafted briefs in support of benefits claims, requested and analyzed medical records, made an opening statement to an Administrative Law Judge, and kept in contact with clients via phone, email, and mail. I was also fortunate to have the opportunity to spearhead a project that CDP was just starting, which became a significant portion of my work. This project aimed to help grandparents raising their grandchildren with disabilities by working with them to apply for Supplemental Security Income (SSI) benefits for these grandchildren. When I came on board, CDP was already working with the Commission on the Status of Grandparents Raising Grandchildren. The Commission, established in 2008 by An Act Protecting Children in the Care of the Commonwealth, is designed to be a resource to Massachusetts residents on issues affecting relatives raising kin. The Commission works with all relative caregivers, but grandparents are the most prevalent relative caregivers. During my first week at CDP, I attended a Commission meeting at which I met the Commissioners, listened to the work they are doing for grandparents all across Massachusetts, learned about the work done by the Kinship Navigator Program for grandparents and other caregivers, and briefly discussed our ideas for this project. The CDP team has also had extensive contact with Lynn Girton, the Vice Chair of the Commission and a former Greater Boston Legal Services attorney, who provided insight into the population and the hopes of the Commission for this project.

The Grandparents Raising Grandchildren Project is particularly important given the population affected. The majority of the children involved, ranging from infants to older teenagers, have been exposed to extreme trauma. Often grandparents take on the responsibility of caring for their grandchildren because they are told the children will go into state custody through child services if their grandparents do not take them. Children often stay in foster care for years before finding a permanent placement, and these grandparents want to avoid that for their grandchildren. Many grandparents in this population are also in a vulnerable situation – they have had to adjust back into parenting after raising their own kids, and they have to do so at the expense of their own household financial stability or retirement savings. This can be especially problematic for grandparents of color who already experience systemic oppression and disproportionate poverty levels and resource allocation.

These family situations occur for a variety of reasons but predominately happen as a result of parent opioid use – a tragic intergenerational outcome of the nation and region’s opioid epidemic. A 2019 study from UMass Medical School’s Commonwealth Medicine division found that 80% of the 415 grandparents surveyed were raising grandchildren because of the parents’ opioid use. Whether the parents are struggling to raise children while experiencing addiction, in rehabilitation, incarcerated, working through mental health struggles, or deceased, their own parents stepped up to support their family. Additional reasons for the parents’ absence, as reported in the 2019 study, include removal by child services, financial issues, not wanting the child, and abuse/mistreatment of the child. The children involved have thus been exposed to trauma and the devastation that can come from a parent’s absence, often in addition to witnessing a parent’s addiction, increasing the likelihood of experiencing mental disabilities resulting from trauma and/or stress.

Grandparents have also had to take on caregiving duties in the wake of the COVID-19 pandemic, after the death or illness of the children’s parents. Approximately 140,000 children in the United States lost a caregiver due to COVID-19 between April 2020 and June 2021 according to the 2021 U.S. Surgeon General’s Advisory on Protecting Youth Mental Health. Further, a report by Susan D. Hills, et al., from the CDC, noted the likelihood of losing a caregiver from COVID-19 was disproportionately higher for children of color than for non-Hispanic white children, increasing the trauma experienced by marginalized communities due to systemic oppression. The harmful and disproportionate impact of COVID-19 and the related economic fallout on low-income and communities of color is obvious, making the need for support—especially financial, such as the SSI benefits upon which CDP’s project focuses—absolutely essential.

Grandchildren being raised by their grandparents range in age from infants up to older teenagers preparing for college. In addition to experiencing trauma relating to their family situation, many of these children have disabilities. In the aforementioned 2019 study, 79% of the 415 grandparents surveyed reported their grandchildren having a disability. Among that 79%, many listed at least two conditions with which their grandchildren struggled. Anxiety and Attention Deficit Disorder (ADD)/Attention Deficit Hyperactivity Disorder (ADHD) were the most prominent conditions, reported by 38% and 37% of respondents, respectively. 32% of the grandparents reported their grandchildren suffering from a trauma- or stress-related disorder, with another 24% noting their grandchildren were impacted by a learning disability. Other reported conditions include exposure to drugs/alcohol at birth, depression, intellectual disability, and Autism Spectrum Disorder. It is clear from this data that the children in this population are disproportionately affected by disabilities, especially mental health conditions.

The grandparents are also a vulnerable population in need of additional support. In Massachusetts, approximately 27,000 grandparents are responsible for their grandchildren’s basic needs. Nearly 10,000 of those grandparents are doing so with no parent present. The majority of these grandparents are women, and a third of them are unmarried. 51% of the grandparents are in the labor force, and 20% of them suffer from their own disabilities. Of the 27,000 grandparents responsible for their grandchildren’s basic needs, nearly 3,550 identify as Black, while just under 3,500 identify as Hispanic. Further, nearly 10% are living below the poverty line (the relevant data does not distinguish between living below the poverty line and living at or barely above the poverty line). While some grandparents are young and/or actively in the workforce, many were saving up for an upcoming retirement or already retired or on a fixed income. Raising grandchildren takes additional time and patience, but it also requires large unanticipated expenses for which these grandparents were not prepared. Retirement savings are suddenly being drained to cover to small expenses like clothes and food, as well as much larger expenses like college and medical costs.

To make clear the need this population has, I reached out to Lynn Girton, Vice Chair of the Commission, to hear some personal stories of grandparents in these situations. I had a conversation with one grandparent, Jane*. Jane and her husband gained emergency custody of their granddaughter, Anne when she was only seven months old. Anne was a substance-exposed newborn with many issues at birth. By the time Jane and her husband gained custody, Anne was showing signs of developmental delays. Jane noted that Anne did not react when her blood was drawn by the doctor, cuing to Jane that there was an issue. Today, Anne continues to struggle with developmental delays and hypertonia, and she uses American Sign Language and an augmented communication device to supplement her minimal verbal communication. Anne also has a full IEP, allowing her to spend half days at school. When Jane inquired about SSI benefits, she was told she and her husband—both of whom are in the work force—make too much money to receive benefits. As will be explained later, SSA’s information was incorrect because the grandparents’ income is not counted (deemed) towards the child’s income for SSI purposes. The family receives no benefits, and they paid out of pocket for a lawyer to gain full custody of Anne. Jane noted that grandparents like her need support, as the situation feels stigmatizing. She noted she was caught off guard by the large magnitude of doctor’s appointments Anne must attend. Jane feels that she put her life on hold, and she has been inspired to get her bachelor’s degree in a related field to help other relative caregivers and parents dealing with opioid addiction.

Another grandparent, Joe, discussed what his life is like caring for his teenage granddaughter. Joe made clear how his granddaughter brings so much joy to his home, but that he might have made different decisions earlier in life to prepare. For example, Joe noted he may not have retired so early if he knew he would be parenting for a second time. Joe and his wife quickly realized this situation is not just a temporary fix for their daughter’s mental health crisis but rather a long-term commitment to their granddaughter. This is true for them and many other grandparents, especially those whose children are dealing with addiction and mental health issues. Joe feels fortunate to have been financially stable prior to taking care of his granddaughter, but still described their finances as “strained” given his family’s situation: retired, unexpectedly caring for their granddaughter’s basic needs, saving for her college, and paying for their daughter—the mother of this granddaughter—to have an apartment while she gets back on her feet. Joe’s granddaughter sees a therapist to work through her experiences, and she has a half-sister with a rare genetic condition who spends a lot of time with the family. Joe noted how helpful SSI benefits would be for this half-sister in particular, as well as his daughter, noting how these benefits “help every generation” in situations like theirs; however, they both have had prior applications denied, and legal help is hard to find in this field. Joe also noted the struggle of balancing his child’s needs with his grandchild’s needs, especially given the constant unpredictability of parents with mental health issues. Joe mentioned the pressure he feels to help his daughter be a good parent while making sure he sets parameters to keep his granddaughter’s best interests a priority. While his granddaughter brightens up his life, Joe recognized it is not easy to be in this situation and feels grandparents are often stigmatized and “looked at with suspicion” when they raise their children’s children.

CDP staff learned from our talks with the Commission that many grandparent caregivers did not realize SSI benefits were available for their grandchildren. As further proof of this, only 21% of the grandparents in the 2019 study were receiving SSI on behalf of their grandchildren, despite 79% reporting disabilities in their grandchildren. Part of this comes from income issues and the way the Social Security Administration (SSA) “deems” income to children to determine financial eligibility. “Deeming” is the process SSA uses to determine financial eligibility for SSI benefits, through which a portion of the parents’ income and resources are counted as if they were the child’s. However, many grandparents—especially those with some financial security or have remained in the workforce—assume their income and resources make their grandchildren ineligible for SSI benefits, as they are not aware of these deeming rules that only consider the income of the child and biological or adoptive parents. The financial status of the grandparents is one consideration, but their income and resources are not deemed to their grandchildren the way biological or adoptive parents’ income is. This makes it much easier to achieve financial eligibility as required for SSI benefits.

The Grandparents Raising Grandchildren Project, currently in development, aims to expand upon the work done by CDP to better serve this population in all ways needed. This population is a very specific subset of SSI applicants with unique challenges within their claims, and the project’s objectives aspire to address these challenges. CDP typically only represents clients in their appeals after a wrongful denial of benefits, but this project can (and likely should) work through the process earlier. Ideally, assistance to grandparents would begin at the initial application level rather than after a denial. Further, CDP has an already full caseload and provides community lawyering, training, and mentoring to other organizations and pro bono partners. For this population, additional outreach would be very helpful—and perhaps necessary. Lack of awareness about their rights is a large barrier to grandparents applying for SSI benefits, so outreach to communities of grandparents will need to be a priority for this project. Fortunately, the connections we have made with the Commission and other organizations already doing on-the-ground work with this population will make outreach much easier. For example, CDP trained a group of grandparents alongside the Disability Law Center in late January, demonstrating how to apply for SSI benefits and how to know if their grandchildren may be eligible. After this training, we provided advice to a grandparent attendee whose granddaughter had been denied SSI benefits despite several conditions that clearly impact her daily functioning.

In addition to outreach, the project will focus on communities of color. The effects of COVID-19 on communities of color only amplifies the disproportionality of poverty and resource allocation experienced as a result of the marginalization and systemic oppression of such communities. Greater Boston Legal Services emphasizes equity, and a specific focus on Black and brown families within this grandparent population is necessary to achieve equitable financial support and resources. The SSI childhood disability benefits program is unique in that it can uplift families out of poverty. SSI benefits provide several hundred dollars each month to these particular families who, in addition to the circumstances surrounding the parents’ absence, are already facing incredible hardships including poverty, unplanned medical expenses, and other financial obstacles. This project is essential to helping a particularly vulnerable population, and I feel very fortunate to have played a part in its upstart through my internship with GBLS and CDP.

*All names have been changed to maintain confidentiality.

The Case for Abolishing the Dedicated Account: How I spent my summer navigating Social Security, disability law, and the regulations that keep families trapped in poverty

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.

Tackling a Systemic Problem: How the Children’s Disability Project Is Fighting the Dedicated Account

WHAT IS A DEDICATED ACCOUNT?

Dedicated account (n.): A separate bank account into which the Social Security Administration (SSA) deposits retroactive, or past-due, Supplemental Security Income (SSI) benefit payments.

            On the surface, this sounds straightforward enough. Imagine that John (a fictive client, age 8) applied for SSI in January 2018 and was denied. John’s mother sought legal representation from the CDP, and at his June 2019 hearing the judge found him disabled, thereby approving him for SSI. So, eighteen months stand between the date of John’s initial application and SSA’s approval. John’s monthly benefit is $200, so he is able to collect eighteen times that – $3,600 – in retroactive benefits. This is a victory, to be sure.

            But there’s a catch: the $3,600 is relegated to John’s dedicated account. This means that he cannot use that money on just anything, because the dedicated account comes with a host of regulations. Not only does SSA mandate the type of bank account into which this money must be deposited, but once the money is deposited there, it must be spent by a certain person, in a certain way.

            First, the only person who may spend that money is John’s representative payee. The representative payee (usually the child’s mother) is also the person who must open the account in the first place. It must be a checking, savings, or money market account – which means it cannot be in the form of mutual funds, stocks, bonds, trusts, or certificates of deposit. Also, the title must show that the child owns the funds, including interest.

            Once John’s mother opens his account, she can only use those funds in two ways: 1) for John’s medical treatment or 2) for John’s education or job skills training. Sometimes it can also be used for personal needs assistance, rehabilitation therapy, special equipment, and other sorts of expenditures that are squarely for the child’s well-being. However, dedicated account money may not go toward food, clothing, or shelter; only regular monthly SSI benefits may be used for those. (Exceptions may be made in cases where the family is facing eviction, but those exceptions must be explicitly granted by SSA.)

            Social Security monitors dedicated accounts keenly. The representative payee must complete an annual report on dedicated account expenditures (as well as a report on the use of regular monthly SSI funds), and for this reason, the representative payee must keep receipts and bank statements. This expense record is crucial.

            Often the representative payee believes that s/he is performing these tasks according to what the SSA has stipulated: John’s mother, for instance, understands that any withdrawal from the dedicated account must go toward something for John that is related to his disability. However, she does not understand just how narrowly Social Security defines what that “something” is. Then she experiences a harsh wake-up call:

            John’s disability means that he has trouble sleeping, so his mother uses dedicated account funds to purchase a breathable comforter ($100) for his bed. However, she does not realize that this expenditure requires asking for SSA’s approval first. So, after having dutifully recorded the price of the purchase and submitting her report to the SSA (without SSA’s written approval of the purchase), she is shocked to find out that the comforter is apparently a misapplication of funds, and that she must return the $100. Again, dutifully, she does what SSA asks, believing that this money will simply go back into John’s dedicated account. However, repaid misapplied funds go straight to the Treasury; John has just lost $100 of his benefits permanently.

~          ~          ~

HOW IS THE CHILDREN’S DISABILITY PROJECT ADDRESSING THIS ISSUE?

Situations like this occur all the time: the representative payee, believing that she is acting according to both her child’s best interest and Social Security’s mandates, gets charged with misapplying dedicated account funds – and ultimately the disabled child gets punished for the payee’s unknowing “mistakes.” The Children’s Disability Project noticed this unjust trend. Not only are regulations on dedicated accounts far too stringent, but field officers (FO) are highly subjective in their decisions about whether those funds are being used lawfully. Moreover, SSA does not adequately convey to representative payees that they ought to get written approval from a FO for every expenditure. The only warning SSA gives is that the representative payee must be prepared to explain any expenditure and how it relates to the child’s disability. Well, John’s mother explained; the issue was that SSA was dissatisfied with her explanation.

Since its founding in 2007, the Children’s Disability Project has taken steps to change this flawed policy. In 2008, CDP created the Saving and Spending Workbook, which offers guidance to representative payees as they track their dedicated account expenditures. In May 2017, Northeastern University School of Law Professor Mary O’Connell wrote an article (featured here on our blog) entitled “Supplemental Security Income’s ‘Dedicated Account’: A Debunked Urban Legend and Twenty Years of Waste.” In 2018, a California parent group reached out to CDP and Professor O’Connell as a fellow body fighting the dedicated account, thereby broadening our network of anti-dedicated account advocacy. In 2019, CDP worked with Disability Law Center’s Linda Landry, Esq. and Professor O’Connell to draft a letter to the Social Security Advisory Board about suggested policy changes. The Board reviewed the recommendations and acknowledged the serious problems with administering Dedicated Accounts. However, they want to conduct further studies on this matter.

In addition to these initiatives, CDP has represented many clients who have had trouble accessing their dedicated account. Though John’s story is fictive, the following case, which is presently open with CDP, is real – and just one of several dedicated account cases that the CDP is currently handling. To conclude, here is Deidre’s story (excerpted from the CDP’s letter to the Social Security Advisory Board):

            Deidre is a 22-year-old young woman who began receiving SSI benefits in October 2010 when she was 13. Her disabilities included depression, atopic dermatitis, psoriasis, obesity and learning disabilities. By the time Deidre’s claim was finally processed by SSA, she was owed approximately 31 months of retroactive benefits (March 2008 application). Deidre’s mother, Brenda, served as Deidre’s representative payee until Deidre was 21. Brenda also has disabilities including depression, anxiety, bipolar disorder, and a learning disability. Brenda had a long work history until she suffered an incapacitating injury. Brenda currently receives SSDI benefits.

            In 2010, CDP successfully represented Deidre on her SSI claim. Six years later, Brenda contacted CDP. Although Deidre was receiving monthly SSI benefits, she had only received one disbursement of $2,113.20 from her much needed dedicated account funds, which totaled over $10,000.

            After she graduated from high school, Deidre wanted to attend Quincy College (QC) to study business. Brenda asked SSA to release funds from the dedicated account for Deidre’s tuition and school supplies, but SSA refused, claiming that there had been both an overpayment to Deidre’s account and a misapplication of funds by Brenda. At her mother’s urging, Deidre registered for classes and attended QC with some student aid (partial tuition) while Brenda struggled to purchase books with Deidre’s monthly SSI and Brenda’s SSDI benefits. In June of 2016, Brenda contacted CDP for help with accessing Deidre’s dedicated account. By that time, however, the semester had ended and Deidre had failed her classes because she did not have the books and supplies she needed to keep up with the assigned work. Together, we contacted SSA, and Deidre, Brenda and CDP attended a meeting at the Social Security office concerning the release of the retroactive funds. We soon learned that Brenda understood that as long as she used the dedicated account funds for Deidre’s education, health and physical well-being she was in compliance with SSA’s rules. A review of Deidre’s SSA file revealed that despite a tedious and complex process spanning approximately three years (2010 – 2013), and requiring the completion of multiple forms and numerous trips to SSA, only one disbursement from the dedicated account had been made. The results were disastrous for Brenda and Deidre.

            On September 29, 2010, prior to opening Deidre’s dedicated account with her local bank, Brenda signed a “Statement of Claimant or Other Person,” a standard one page description of the dedicated account. Brenda took the agreement to mean that she could use the dedicated account money for any expenses related to Deidre’s impairments, as long as all purchases made were for Deidre. In 2011, a disbursement of $2,113.20 was made from the dedicated account and Brenda used the money for necessary items for Deidre, such as larger clothing, low calorie food for weight loss, hair treatments, and school supplies. On April 14, 2011, Brenda signed a “Representative Payee Report of Benefits and Dedicated Account” form, which was completed by a FO staff member. On February 6, 2013, Brenda signed a dedicated account “Use of Funds Statement,” again completed by FO staff. In the “Use” statement Brenda described her purchases for Deidre along with the cost of each item and provided receipts. The next day, February 7, 2013, Brenda received a notice from SSA alleging misapplication. Brenda contacted SSA and on February 22, 2013 signed a statement drafted by SSA agreeing to repay the $2,113.20, despite the fact that all of this money had been spent for Deidre’s needs. Brenda began paying SSA $50 per month, until she could no longer afford the payment. All of these payments were returned to the U.S. Treasury and not to Deidre’s dedicated account.

            Despite SSA’s claim of overpayment and misapplication of funds, in 2016, after speaking with the SSA district manager, we were able to get SSA to release funds for books, a laptop and tuition for Deidre’s upcoming college semester. After the 2016 release of funds, the local SSA office experienced a staff change. The new claims representative assigned to Deidre’s case refused to release any further tuition payments until the alleged overpayment and misapplication issues were resolved. The FO staff change and the refusal to release further funds is a clear example of FO staff’s subjective interpretation and application of the dedicated account rules (i.e., FO staff person #1 will approve an item and FO staff person #2 will deny the same item). CDP, representing Deidre, appeared before an Administrative Law Judge (ALJ) to challenge SSA’s actions in Deidre’s case and to request that SSA be ordered to release funds held in Deidre’s dedicated account (approximately $8,000 in retroactive SSI) for payment of her tuition, books, school supplies and other necessary expenses. In his decision, the ALJ waived the full amount of the alleged overpayment, finding that Brenda and Deidre were not at fault, and that no misapplication had occurred. The ALJ ordered that the balance in the dedicated account be released. The ALJ further found that all monies spent on items for Deidre were necessary.

            Deidre’s case illustrates the many pitfalls associated with administering the dedicated account. According to the ALJ, SSA staff did not properly apply the concept of “other” allowable expenses such as hair treatments and larger clothing; SSA did not do enough to ensure that the representative payee had a clear understanding of the many restrictions on the use of the dedicated account; and SSA failed to timely release funds. Though she was entitled to the funds in her dedicated account, the restrictions and the bureaucracy surrounding that account meant that it profoundly failed Deidre. Only eight years later – after Deidre had abandoned her dream of attending college – were the funds released, and then only by court order. Most children receiving SSI cannot access legal advocates. For them, the dedicated account often means that funds which are supposed to be used to accommodate their disabilities are, in essence, forfeited. Cases like Deidre’s – which, sadly, are commonplace – prove that the dedicated account rule needs to change.

It is an ongoing mission of the CDP to track dedicated account cases and continue pushing for policy change.

Meet Our Team: Nasrin Mohammad

Nasrin Mohammad has always been interested in working with children and families – and in November 2018, this interest steered her to the Children’s Disability Project of Greater Boston Legal Services (GBLS-CDP). At the time, she was a 3L at Northeastern University School of Law (NUSL), completing her fourth and final “co-op,” a school-credited learning structure that places students in term-time internships. “I obviously wanted to do my last co-op in a field that I loved,” Nasrin reflected, noting that the CDP was the perfect capstone to her career as a law student.

As an undergraduate, Nasrin was a dual-major-double-minor, earning majors in Political Science and International Affairs and minors in History and Law & Public Policy. Her main focus at the time was foreign affairs, and her studies took her to Rio de Janeiro, Prague, and Brussels. During this time, she also interned at two law firms, Ropes & Gray LLP and Wilmer Cutler Pickering Hale and Dorr LLP – the latter hiring her as a Law Clerk for the Managing Attorney’s Office for three years after her undergraduate graduation.

“Coming out of that experience, having worked there for three years, I knew this wasn’t what I wanted to do,” said Nasrin, who valued the experience for its introduction to the legal world. It confirmed for her, before she even began law school, that she did not want to practice at a big law firm. “My long-term goal is to open a non-profit for women and children in Bangladesh, giving medical care, educational tools and legal representation, helping women and children get off their feet,” Nasrin explained.

According to Nasrin, her background greatly informs her career aspirations. Nasrin emigrated from Bangladesh when she was 8 years old, which sparked her interest in international law: she recognizes the poverty, overpopulation, and lacking social systems in Bangladesh and has developed a passion to serve the underserved through law and policy.

At Northeastern Law, Nasrin’s co-ops focused on family law. Her first co-op placed her at the Brooklyn Defenders Services, Family Defense Project. There, Nasrin said that she observed a “vicious cycle of punishing people for being poor.” She went to court regularly with her supervisors: “This is where I fell in love with family law.” So, for Nasrin’s second co-op, she worked for two judges in Family Court in King County Family Court, New York.

Ultimately she found her way to CDP, which Nasrin described as the perfect fit. “It was amazing for me as a person of color, working with black and brown bodies on disability cases that affects the entire family.”

As CDP’s Legal Intern from November 2018 – February 2019, Nasrin said she was treated as an associate, which helped to transition her from a law student to a practicing lawyer, just a few months before her graduation from NUSL. “This was the first time that I had full case management. Tara would give me a folder and say, ‘This is your case.’ I just thought this was an amazing opportunity,” Nasrin reflected.

With CDP, Nasrin had the opportunity to work on cases at all levels of the process. She won hearing before an administrative law judge (ALJ); she went to the Appeals Council; she even drafted and filed two federal court complaints. Nasrin said that winning the ALJ hearing was particularly rewarding. Her young client  was not receiving the proper care for her behavioral and cognitive disabilities at school, and now, with her SSI benefits, this young girl can afford years of care, thereby leading a fuller life at school and in the community with her deserved supports.

Nasrin just sat for the July bar exam and is taking August to unwind and move back to her hometown of New York City. As she looks ahead to her next job, she said that CDP has opened up the possibility of practicing disability law, in addition to family law.

“CDP was a really great call for me. The CDP family is very strong, and so incredibly supportive. They don’t underestimate you; they push you; they give you the resources as much as they can. I feel like when I go into the real world, when I get my bar exam results, I’ll feel more equipped, more confident, like: If I could do this as a student, I can do this now.”

By Isabel Ruehl – CDP Student Intern

Civil legal aid gives mother a voice and hope

Courtesy of Massachusetts Legal Assistance Corporation (MLAC).

This photograph of Danielle is courtesy of MLAC and Kenneth Martin.

Danielle’s daughter was born with sickle cell anemia, a potentially life threatening disease. After her applications for benefits were denied twice, Danielle reached out to Greater Boston Legal Services (GBLS) for help with what would become an eight-year legal battle for her daughter’s health coverage.

When her daughter was still an infant, Danielle missed work frequently to bring her to the hospital, eventually losing her job. She applied for Supplemental Security Income (SSI) benefits for her daughter and was denied. She reapplied, and was denied again, this time due to an administrative error – a missing signature on the application.

Danielle found a job at the Head Start program which allowed her to care for her daughter and provide services for other families. Through that job, Danielle learned about Greater Boston Legal Services. She reached out, and met Tara, her GBLS attorney.

Tara helped Danielle appeal the SSI decision before an administrative law judge. At the hearing, a medical expert downplayed the severity of the disease, and the appeal was denied. Danielle and Tara fought a long battle of denials and appeals for seven years, while Danielle’s daughter continued to face frequent health crises and hospitalizations.

Over the years, Danielle became an expert on her daughter’s sickle cell anemia. She learned how reactions were triggered, what the best conditions for her daughter were, and to be on guard at all times. Danielle knew that despite what the medical professional in administrative court said, her daughter deserved the SSI benefits. Meanwhile, she put herself through school to become a social worker, motivated to help people in similar situations to her own.

After eight years, the SSI benefits were finally approved, retroactive to the original date of application. The benefits gave Danielle’s daughter the medical support she needed. When her daughter turned nine, Danielle reported, “She’s really doing well.”

Through advocacy, GBLS empowered Danielle in a civil legal system that felt inaccessible and frustrating. “Whenever I felt out of my element and scared, Tara told me, ‘We’ll take care of the lawyer piece, you take care of your daughter.’ It gave me a sense of security, a feeling that I had a voice,” Danielle said. “GBLS-and Tara- never gave up on us, and that gave us hope.”

Meet Our Team: Majda Abbas, Legal Intern

“Since deciding to pursue a career in the legal field, I knew that I wanted to be able to advocate and help those who could not afford representation,” said Majda Abbas, who has been a Legal Intern with the Children’s Disability Project since March 2019.

Majda is a rising 3L at Suffolk Law School, concentrating in Health and Biomedical Law. Though she has a broad range of experience in the legal field – from public sector work at the U.S. Department of Health and Human Services to private sector work with Welch and Associates LLC – Majda has long known that she wants to specialize in health care.

The inspiration came from an internship she held as an undergraduate at Suffolk. When Majda was a junior – at the time, planning to be a child psychologist – she worked at Advances Learning Center, using Applied Behavior Analysis to teach social skills to children with autism. From January to June, Majda devoted her Saturdays to a class of students between the ages of 4 and 16, and they made a lot of progress – until many stopped coming. Numbers dwindled during Majda’s final few weeks at the internship.

“I asked one of my supervisors, and she said that’s because their insurance can’t cover any more sessions,” Majda recalled. “This was so beneficial for the kids. And just seeing them not be able to come back really…hurt.” This, she said, is when she realized she wanted to go into health care law.

Here in the Elder, Health & Disability Unit, Majda has been working with dozens of clients to get them the Social Security benefits they deserve.

“While at GBLS, I have learned the real importance of showing empathy towards clients, whether it be through actively listening to them, recognizing their emotions, or understanding that they are currently going through one of the most difficult times of their lives,” Majda said.

Although Majda primarily works with children’s cases, she named an adult client as one who has taught her the most. This woman – the mother of a child with disabilities, whom CDP represented – was seeking Supplemental Security Income (SSI) benefits due to mental disabilities stemming from serious domestic violence in both her previous marriages, as well as witnessing the Iran-Iraq War at a young age. Majda worked closely with her to develop the case, write its brief, and deliver the opening statement before an Administrative Law Judge.

Majda said that she has also formed real connections with the mothers who bring claims on behalf of their children. About one family, Majda said, “They have to deal with so much adversity, especially the mom, but she just keeps fighting. You feel like she’s put on this earth just to be their mother.”

As Majda looks ahead to her post-graduate future, she envisions clerking or doing policy work in some capacity, perhaps working for a congressperson or senator. She hopes that these applications of legal practice will broaden her modes of experience. She also plans to work in policy this fall in a Human Rights and Indigenous People’s Clinic, in which students will be primarily learning to write legislation.

Majda sees GBLS’s Children’s Disability Project as formative in her development as a lawyer for its balance of independent work and robust mentorship.

“GBLS has made me feel more secure about being a lawyer because it showed me the different things that come with being a lawyer,” Majda reflected, citing the various stages of the process, from interviewing clients and getting medical records to writing briefs and attending hearings. “I wanted to change people’s lives for the better, and seeing the way this organization’s dedication and commitment to providing free legal services has dramatically influenced those individuals and families who are low-income is what inspired me to work for GBLS.”

By Isabel Ruehl – CDP Student Intern

Meet Our Team: Isabel Ruehl, Undergraduate Intern

On June 3 – just two month ago – I started my summer-long student internship with Attorney Taramattie Doucette, Project Director of the Children’s Disability Project (CDP). I didn’t yet speak the language of “ALJs” and “HIPAA releases” and “file memos”; I hardly knew the difference between SSI and SSDI, between Medicare and Medicaid. I had only a superficial understanding of the vast system of Social Security programs, but I was interested in healthcare and disability rights law and badly wanted to learn more.

And so I did – a lot more, and quickly. Already I’ve appeared at a hearing, met with clients, drafted file memos, liaised with pro bono partners, and sent countless medical records requests to gather evidentiary support. On my first day here, Atty. Doucette told me that I need to “touch a case each day in order for it to move forward.” And so 15 cases, so far, have grown before my eyes and at my fingertips. Each tells a different story – but each is about a child (and, by extension, family) that has been wrongfully denied government benefits on the basis of disability.

I’ve been interested in civil rights law for a while. My older brother, age 24, is on the “severe” end of the autism spectrum, and although he has some wonderful mentors and advocates in his life, he has experienced a lot of injustice, too. I’ve also seen how families of persons with disabilities are affected by those inequalities. I want to devote my career to rights-based advocacy and public interest law – and I also hope to integrate creative writing into my future. As a rising senior in Harvard’s English Department, I am preparing to write my senior thesis on the changing landscape of adult autism services. I hope that this fusion can amount to some form of advocacy as I study problems and present them to a broader audience.

My internship here with the CDP combines those passions – law and creative writing – in an exciting way: in addition to my caseload, Atty. Doucette has also asked me to update CDP’s blog. The goal is for this to be a platform to learn more about clients’ stories, GBLS work (challenges and victories alike), systemic disability rights issues, SSA news, and anything else relevant to our legal aid work. I’m honored to be a part of this project, at the heart of which is storytelling.

Naturally my favorite part of working here is hearing clients’ narratives firsthand, in-person. But I hope that CDP blogs can capture some of that urgency, empathy, and advocacy that characterize the claims that clients bring to GBLS. I’ve met some remarkable people here; stay tuned for their stories.

Pro Bono Partnerships

Featured in the GBLS Annual Report 2019.

For several years, lawyers from Proskauer Rose LLP have partnered with attorneys from Greater Boston Legal Services’ Children’s Disability Project to help children and their families appeal wrongful denials of disability benefits. For GBLS’ young clients, the financial support received through disability benefits allows them to meet their health and welfare needs and thrive in their schools and communities.

Recently, Proskauer’s pro bono attorneys appealed a denial of SSI (Supplemental Security Income) benefits for GBLS’ client Jameel*, a fourteen year-old boy who suffers from diabetes, depression, and ADHD. Jameel’s father was violent and abusive, and was opposed to any mental health treatment or academic supports for Jameel. Despite resistance from Jameel’s father, Jameel’s mother pursued treatment for her son because she knew it was essential to his well-being.

Eventually, Jameel’s parents divorced, but years of an abusive marriage left Jameel’s mother feeling hopeless for herself and for Jameel. She struggled to manage Jameel’s diabetes and to secure the educational accommodations his disabilities require. After Jameel’s claim for benefits was denied, Jameel’s mother was determined to ensure he had the help he needed, and came to GBLS. A team of pro bono attorneys from Proskauer took on Jameel’s case.

To prepare Jameel and his mother for the hearing, the team from Proskauer had to consider the many complicating factors in their lives: the impact of long-term domestic violence; Jameel’s serious physical and mental health limitations — which made it difficult for him to participate in his case; and shame about seeking benefits.  Jameel’s advocates worked tirelessly with the family to gather evidence, draft a compelling brief, and thoroughly prepare Jameel and his mother for the hearing.

The team’s hard work paid off. The victory resulted in Jameel obtaining the disability benefits that will ensure that he receives the support he needs to thrive in school and beyond.

*Names have been changed to protect client confidentiality.

Pictured above: Attorneys Rachel Dougnac and Benjamin Sacks, who provided legal representation in this case.

Meet Our Staff: Brian Kiwanuka, Esq.

Since March of 2017, Brian Kiwanuka has been a Staff Attorney of GBLS’s Children’s Disability Project and Elder, Health and Disability Unit (EHDU). His expertise spans many areas: from children’s Supplemental Security Income (SSI) cases to adult SSI and Social Security Disability Income (SSDI) cases, from Medicare to nursing home law, Brian applies his passion for public interest law to every case he encounters.

But, had you asked him five years ago whether he would practice disability law specifically, Brian would have said no. As an undergraduate at George Washington University, studying political science and Spanish, Brian planned to practice international law. In fact, he interned for six months at a Chilean organization called Chile Transparente (“Transparent Chile”), where he did international law research, focusing in particular on the global relativism of collusion cases.

Brian then attended Northeastern School of Law, during which time he planned to practice unemployment law. He interned at the Massachusetts Commission Against Discrimination (MCAD), where he focused on discrimination cases of race, national origin, and disability; he also interned at the American Federation of Government Employees, where he advocated for the rights of TSA workers. Brian maintained his interest in international law, interning at the International Bar Association, where he researched the effect major sporting events (such as the Olympics and World Cup) have on human rights law and foreign domestic law.  

After graduation, when he heard that GBLS was looking for an experienced, bilingual attorney, he applied for the position: “I was both of those things,” Brian said, smiling. “It all fell into place.”

Indeed it did: Brian’s Spanish fluency has been an immeasurable asset to the Children’s Disability Project, for he is able to communicate with clients and communities in their first language. CDP Director Taramattie Doucette says that this simple connection – language – lends Brian’s representation a special empathy and clarity, because suddenly the linguistic barriers that Spanish-speaking clients face disappear. Brian is able to communicate in a way that eliminates the confusion that often accompanies legal jargon, while (perhaps more importantly) relating closely with the clients and their experiences. After all, one seeks legal aid from GBLS only if one has suffered; imagine, on top of that, navigating the legal process in a language that is not one’s own. Implicitly, Brian’s ability to provide Spanish-speaking representation conveys deep empathy for clients’ adversities.

Brian says that he enjoys working with children and their families, naming one of his CDP cases the most inspirational he has encountered: “It was a good case because everyone was really happy with the outcome. It was really good to see an immigrant family get the benefits they deserve.”

The client was a six-year-old girl whose mother came from Honduras and did not speak any English. She could not understand why Social Security was refusing her daughter SSI benefits, since her daughter was clearly disabled: born with a condition called cloacal malformation, this little girl had extreme difficulties with several personal care activities, including toileting. Despite having to use a catheter and requiring a nurse on-hand at school to support her many needs, this child was twice denied SSI benefits. With his Spanish skills, Brian was able to engage deeply with the client and her mother, gathering robust evidentiary support to present a case that was compelling to all – and ultimately resulting in a victory. The life of this child and her family was undoubtedly, positively, and permanently impacted by Brian’s hard work.

By Isabel Ruehl – CDP Student Intern

Who Is Our New Social Security Commissioner?

Introducing Andrew M. Saul

AndrewSaul_WikimediaCommons
Photo courtesy of Wikimedia Commons.

With a Senate confirmation vote of 77-16, Andrew M. Saul was sworn in as Commissioner of Social Security on June 17, 2019. His six-year term expires on January 19, 2025 – and marks the first Senate confirmation of a Social Security Commissioner in more than five years.  He was nominated by President Trump to replace Nancy Berryhill on April 17, 2018.

The Commissioner is responsible for administering the Social Security retirement, disability, and survivors insurance programs, as well as the Supplemental Security Income program. Altogether, these programs annually distribute more than $1 trillion of benefits to upwards of 70 million people – around one sixth of U.S. residents, according to recent statistics. The Social Security Administration itself amounts to around 1,500 facilities and 63,000 employees, all under the leadership of Saul, who reports directly to Trump.

“The Social Security programs touch the lives of almost every American – serving in this position is a tremendous privilege and an awesome responsibility,” Commissioner Saul said. “I am humbled by the opportunity to help the agency to deliver critical services to the American people.”

But the question remains: Who is Commissioner Saul? And how will he take SSA, the largest social welfare administration in the United States, into the future?  How will he deal with delays and other service issues caused by the underfunding of the agency’s administrative budget? How will he ensure that the trust fund remains viable? With his experience in big business and politics, many advocates for Social Security oppose his appointment, arguing that Commissioner Saul is unfit because he has no direct experience in the field.

“He has no background in Social Security whatsoever,” said Alex Lawson, Executive Director of Social Security Works, an advocacy group aiming to “maintain Social Security as a vehicle of social justice.”

Commissioner Saul earned a B.S. from the Wharton School of the University of Pennsylvania in 1968 – Trump’s graduating class – before beginning his career in business. He managed two large apparel chains, Brooks Fashion Stores and Caché, for more than twenty years, then founded an investment firm, Saul Partners, L.P., with his father in 1986. He is also a member of a slew of Boards of Trustees, including the Federation of Jewish Philanthropies, the United Jewish Appeal Federation, Mount Sinai Hospital, the National Gallery of Art, and the Manhattan Institute for Policy Research.

This last body is a source of skepticism for some, since the conservative think-tank has continually called for significant cuts to benefits. For example, in 2018, the Manhattan Institute published an article in the New York Post predicting Social Security’s “looming bankruptcy.” Many Social Security supporters are worried about budget cuts: does his board membership indicate how he may steer the Social Security Administration?

Saul’s most relevant experience to Social Security is his tenure as the Chairman of the Federal Retirement Thrift Investment Board, which manages the Thrift Savings Plan (TSP) for federal government agency employees and military members. This committee provides retirement security to 3.7 million people, and Saul was unanimously confirmed for this position by the Senate.

Still, many remain uncertain about the relevance of TSP to SSA. “While the experience Mr. Saul gained from his time working on the federal …TSP was undoubtedly valuable, it has little value to helping him run the Social Security system, unless he seeks to privatize the program,” wrote Nancy Altman, Social Security Works President and Chair of the Strengthen Social Security Coalition, in a letter to the U.S. Senate Committee on Finance.

Although journals have cast Saul as a partisan figure since his brief New York Congressional campaign in 2007, some remain hopeful that he will work toward SSA change beyond budget cuts. U.S. Senator Ben Cardin (D-Md.) is one such optimist, as well as a member of the Senate Finance Committee, which helps to oversee the SSA. This committee has twice approved Saul unanimously, both in 2019 (28-0) and 2018 (27-0).

“Once the Senate confirms Mr. Saul, I intend to hold him accountable for how he and the SSA treat its workers as well as its beneficiaries. Both relationships are in dire need of improvement,” Senator Cardin said. “Foremost, I will hold Mr. Saul to his word that he will work to restore a constructive, positive relationship between labor and management at SSA. I also expect him to continue to modernize the disability claims system and SSA’s outdated and fragile IT infrastructure.”

Despite those rumors and reluctance regarding Saul’s appointment, many agree that he will provide stability to the SSA. After all, he is the first Senate-confirmed head of SSA in over five years. President Obama’s 2013 appointee, Carolyn W. Colvin, was not confirmed, and Nancy Berryhill served as Acting Commissioner (a 300-day term in 2017, from January to November) before she continued leading the SSA as Deputy Commissioner of Operations until June 2019.

Jim Allsup, the CEO of Allsup Inc., is optimistic about the capacity for a new Commissioner to revitalize SSA. As he wrote for a Washington Times Opinions piece, “A new, Senate-confirmed leader can provide a fresh start for a beleaguered agency and the weary constituency it serves.”

By Isabel Ruehl – CDP Student Intern

SOURCES:

https://www.cardin.senate.gov/newsroom/press/release/cardin-statement-on-the-confirmation-of-andrew-saul-to-be-the-next-social-security-commissioner

https://www.ssa.gov/agency/commissioner.html

https://drive.google.com/file/d/0BzSSrp0ipxjRMXNlVC05MzR3bHVRN0d6UjE5eVB5c1VoWlBF/view

https://www.washingtontimes.com/news/2018/apr/18/why-the-social-security-disability-backlog-must-be/