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.