Thanks to your generous support, HLA has represented 897 clients in 2023 so far. Here are stories behind two of those cases. 

Jonathan, age 10, with his family

Johanna is the mother of three boys: Jonathan who is 10, his twin brother Joel, and older brother Johan, who’s 12. When Jonathan was only 18 months he was diagnosed with autism and later with global developmental delay.

Growing up with these disabilities, Jonathan struggled in ways his twin brother didn’t. He would refuse to get dressed for school and began to show signs of aggression, such as scratching and hair pulling. When Jonathan was around five, he started coming home from school with bruises, which his teachers would often downplay. He was regularly pulled out of his classroom for his behavior, missing valuable learning time. Johanna begged Jonathan’s school to increase services for his disabilities, but they kept reassuring her that more services weren’t needed and everything was “fine.”

One day, Johanna and her kids were at a trampoline park and Jonathan started acting very recklessly. It took four people, including Johanna, to restrain him, and he was hurt in the process. That event felt like a tipping point. Feeling hopeless, Johanna went to Boston Children’s Hospital for help. The hospital staff referred Johanna to Health Law Advocates and their case was immediately assigned to Mental Health Advocacy Program for Kids Staff Attorney Toni Kokenis.

Toni went directly to Jonathan’s school and pressed for multiple meetings regarding immediate safety concerns. This quickly led to the implementation of a daily communication plan and body check. Toni also initiated discussions with Jonathan’s school about his special education services. This advocacy resulted in Jonathan receiving a one-on-one aide and a communication device for him to express his needs. Still, Johanna believed these were stopgap measures and that Jonathan truly required a new placement altogether.

To work toward the goal of a new placement, Toni helped Johanna access a series of new evaluations for Jonathan from Boston Children’s Hospital. Toni then filed a case with the Bureau of Special Education Appeals (BSEA) to compel Jonathan’s school district to provide the services Johanna knew he could receive at a private day school that could meet his unique needs. When Johanna and her family moved to a different town before the BSEA case was resolved, Toni advocated for the family all over again with with Jonathan’s new school district and secured the placement Jonathan needed, where he is thriving!

“…for the first time I felt like there was someone who was really trying to understand me and what I wanted for Jonathan. I have friends who are struggling with similar experiences and all I can do is refer them to HLA and MHAP for Kids because they really do help and they genuinely care.”

- Johanna

HLA Staff Attorney Kathryn Koch recently represented T.R., the mom of two kids aged 16 and 12. Both children have experienced trauma and have PTSD and ADHD. One of her children, 16-year-old S.T., has also struggled with severe depression, self-harm, and aggression.

While waiting for a specialized long-term treatment bed, S.T. stayed for six months in a hospital’s inpatient psychiatric unit. When S.T. was finally discharged T.R. received an astonishing bill from the hospital. The bill showed that the total charges were $675,000, that the family's MassHealth plan paid $628,000, and T.R. was being charged the balance of over $46,000. Understandably, T.R. was shocked.

T.R. was already exhausted by years of struggle with the health care system to get the mental health care her children needed. She could not imagine paying the bill while caring for her children, but she felt too dejected and worn down to fight it and considered setting up a payment plan.

T.R. brought the bill to MHAP for Kids Supervising Attorney David Satin, who represented her family in 2022, and David immediately referred them to Kathryn Koch, an HLA Staff Attorney and Justice Catalyst Fellow whose work focuses on representing consumers with medical debt. Kathryn counseled T.R., informing her that MassHealth regulations require that health care providers accept payment from MassHealth as payment in full, and prohibit providers from billing members for remaining balances. After speaking with T.R. Kathryn wrote to the hospital explaining how the $46,000 bill contravened MassHealth’s regulations. Within a few weeks, Kathryn was able to call T.R. and confirm that her balance with the hospital was now zero.

Attorneys such as Kathryn are trained to address erroneous medical billing of MassHealth members and other consumers, but these bills cause immense stress when consumers receive them and are not aware of their legal rights and protections. When providers bill patients for amounts not owed, patients face difficult choices. A recent study found that 61% of households with food insecurity in Massachusetts had to choose between paying for food and paying for health care. HLA’s Medical Debt Initiative protects consumers from these terrible predicaments.

“My expectation was that they would lower the amount but I was still expecting to pay something. I even asked (Kathryn), are you sure it's zero, and she said yes, it's zero. Without her I don't think I would have been able to do that, I don’t think I would have even tried…I would have resigned myself to trying to pay it off…It felt like for a while the worst things had been happening to me and for someone to say, we'll take this off your shoulders, it's an amazing feeling.”

- T.R.

HLA’s Pro Bono Legal Network is our longstanding panel of volunteer attorneys who expand HLA’s capacity to fight for health care justice by accepting bono referrals from our staff. Since the start of 2023, Legal Network members have accepted 15 case referrals. The clients in these cases range in age from 3 to 74, span different 7 different counties, and face a wide variety of barriers to health care. 

Our Legal Network attorneys come from private firms, pharmaceutical companies, and nonprofit organizations; and we also have attorneys who are retired, and who lead health law clinics at local law schools. Their pro bono support is very important and helps us meet the extraordinary demand for our services. We’re so grateful for their commitment!

The following attorneys have accepted pro bono cases in 2023:

Jessica Beglin

Michelle Choi

Amy Davis

Jim Jacobson

Amy Joseph

Emily Lau

Jennifer Lee

Lisa Neeley

Jill Porter

Jason Stewart

Laura Goodman

Alexis Theriault

Matthew Miller

Sarah Boonin and the Health Law Clinic at Suffolk Law School 

Improving Health Care Coverage Rates Among Immigrants

One of HLA’s top priorities is expanding access to health care for immigrants across the Commonwealth. A major focus of this work is addressing the relatively high rate of uninsurance among immigrants in Massachusetts. The most recent census data shows that in 2021 the rate of uninsurance among immigrants decreased for the eleventh straight year. In 2021, the uninsurance rate for immigrants stood at 8.59% (in 2010 it was 16.12%). Between 2010 and 2021 Massachusetts added approximately 50,000 immigrant residents while the number of immigrants who were uninsured dropped by about 34,000. Many organizations and individuals have worked together to achieve these important gains for our community and HLA is proud of the role we have played through years of legal action, policy advocacy, and outreach. This job is not nearly finished though, and we will keep fighting for health care access for immigrants in our state.

Source: U.S. Census Bureau

HLA recently launched an important new project, with support from the Health Foundation of Central Massachusetts, to protect health insurance benefits for people who rely on MassHealth, which provides coverage for more than two million Massachusetts residents with low income and/or disabilities. The impetus for this project is a change in the law relating to the end of the COVID-19 public health emergency.

During the pandemic, federal law required MassHealth to temporarily stop the annual process of determining who qualifies for coverage and who does not, in order to prevent people from losing access to health care during the worldwide health crisis. On April 1^st of this year a new federal law required MassHealth to restart checking members’ eligibility and to complete a review of every member within 12 months.

This “redetermination process” poses a risk that people who remain eligible for MassHealth will mistakenly lose coverage. This risk comes from language barriers for those with limited English proficiency, address changes occurring during the pandemic years, and the sheer volume of people going through the process (an estimated 2.4 million). To protect the rights of people to maintain their coverage, HLA has launched a MassHealth Redeterminations Project. HLA’s Project Manager/Staff Attorney Kara Hurvitz is heading up this important initiative. Key aspects of this year-long effort include:

• Representing people who have filed or are considering filing an appeal if they lose their coverage,
• Helping people who have accrued medical debt after losing coverage in the redetermination process,
• Partnering with community organizations like Health Foundation of Central Massachusetts to support the most vulnerable populations through direct outreach and trainings.

HLA Project Manager/Staff Attorney Kara Hurvitz presenting to community advocates at "Centering Health Equity Here in Central Massachusetts" on March 22 at the Beechwood Hotel in Worcester.

Informing Community Members About MassHealth Redetermination through Training and Outreach

Over the past few months, Kara has led our MassHealth redetermination training and outreach efforts. On March 22^nd, HLA joined forces with The Health Foundation of Central Massachusetts and the Health Equity Compact to organize a breakfast event called “Centering Health Equity Here in Central Massachusetts” at the Beechwood Hotel in Worcester, in which we spread the word about the MassHealth redetermination process and provided tangible next steps for community advocates. Approximately 60 participants from a wide range of community health and social service providers attended.

We have also sent emails, letters, and flyers by U.S. mail to hundreds of former and current HLA clients informing them of the MassHealth redetermination process and urging them to call us if they have any questions or concerns. Our outreach materials have been translated from English and distributed in four other languages (Spanish, Portuguese, Haitian Creole, and Simplified Chinese).

Kara is also running other outreach events such as an ongoing training series for the state’s network of Family Resource Centers throughout the Commonwealth, giving their staffs a crash course on what’s happening with the redetermination process and what to do if one of their community members approaches them for help.

In addition, HLA's Executive Director Matt Selig recently co-authored a Boston Business Journal column on MassHealth's redetermination process with The Health Foundation of Central Massachusetts' President and CEO Dr. Amie Shei.

Advocating for Consumers at Meetings with MassHealth

On top of direct service and robust outreach efforts, HLA also regularly meets with MassHealth officials to inform them of what consumers are experiencing, including the systemic barriers that make it difficult for members to access the health care they deserve. In these discussions we advocate for adjustments to the redetermination process to protect consumers’ rights and help the process run more smoothly. We will continue all these efforts to protect consumers until the year-long redetermination concludes.

Publishing Comments on the U.S. DEA’s Proposed Rules for Prescribing Controlled Substances

On February 24, the U.S. Drug Enforcement Agency (DEA) proposed new rules for prescribing controlled substances via telemedicine. Prior to the pandemic, patients were required to complete an in-person doctor’s visit to acquire a prescription for a controlled substance. During the federal Public Health Emergency, patients could acquire such prescriptions through their providers via telemedicine.

The DEA proposes discontinuing the prescribing of controlled substances via telemedicine if the patient has never had an in-person exam.

HLA’s Head of Litigation, Steph Neely, co-authored comments on the DEA’s proposed rules with Suzanne Davies from Harvard Law School’s Center for Health Law and Policy Innovation on behalf of The Massachusetts Transgender Health Coalition. The comments specifically ask the DEA to carve out an exception for testosterone, to continue allowing remote prescriptions without an in-person visit based on the reasoning below:

“The Department’s Proposed Telemedicine Rule threatens to significantly curtail access to gender‐affirming health care for trans men and nonbinary and gender diverse individuals. By re‐imposing an in‐person requirement to access testosterone, an extremely common and safe form of gender‐affirming hormone therapy, the DEA’s Proposed Telemedicine Rule needlessly disrupts an essential path to care for gender diverse individuals who may live far from gender‐affirming care providers or face discrimination from their local medical practice.”¹

On May 4^th, the DEA published a press release stating the agency received 38,000 comments on this proposed rule and as such will be extending the current flexibilities while they “work to find a way forward to give Americans that access with appropriate safeguards”.

HLA Deputy Director Marisol Garcia (R) and Trish Elliott, DrPH of the Boston University School of Public Health (L) at the MHAP for Kids legislative briefing on March 27th.

On Monday, March 27^th, HLA’s Mental Health Advocacy Program (MHAP) for Kids held a legislative briefing at the State House to present the newest evaluation of the program conducted by the Boston University School of Public Health (BUSPH). The event, which was also livestreamed, was generously hosted by Senator Cindy Friedman and Representative John Lawn and welcomed more than 60 lawmakers and staffers.

Senator Friedman spoke about the value of MHAP for Kids for Massachusetts families, and two parents who have been represented by MHAP for Kids attorneys shared emotional stories about how the program helped their children access critically needed mental health services. HLA Deputy Directory Marisol Garcia delivered an update on the program's model and its growth into a statewide program thanks to funding from the state since 2017.

Patricia Elliott, DrPH of the BUSPH, presented the latest data on the program, which was published in January. Dr. Elliott highlighted that partnerships with Family Resource Centers and Accountable Care Organizations have helped MHAP for Kids assist younger and more diverse kids. In terms of outcomes, the study found that MHAP for Kids:

• Significantly improves the overall mental health of children;
• Significantly improves the overall mental health of family caregivers;
• Dramatically decreases the need for inpatient hospitalizations of children (34% reduced to 14%);
• Significantly decreases the need for emergency room visits (42% reduced to 17%); 
• Significantly decreases the need for in-home mobile crisis team services (40% reduced to 24%); 
• Decreases children’s need for stays in residential facilities (19% reduced to 8%);
• Reduces juvenile court Delinquency involvement; 
• Decreases youth's Child Requiring Assistance juvenile court involvement; 
• Significantly improves overall family functioning.

HLA Deputy Director speaking at the legislative briefing.

Since our last quarterly newsletter in February, HLA staff have conducted 34 training programs for consumers and health, social service, and legal service providers. Recent topics of HLA trainings across the state include the impact of the MassHealth’s recently launched eligibility redetermination process, children’s rights to access mental health services, and health care access for immigrants. 

MHAP for Kids Supervising Attorney David Satin presenting during a Child Requiring Assistance (CRA) training, part of an Family Resource Center training series.

HLA is especially active providing trainings for staff members with the state’s network of 29 Family Resource Centers (FRCs). Every month, a member(s) of HLA’s Mental Health Advocacy Program for Kids team facilitates a presentation that focuses on a topic that helps staff of the FRCs better advocate for families. For example, last month Supervising Attorney David Satin and Staff Attorney Toni Kokenis delivered a training on Child Requiring Assistance (CRA) matters in juvenile court, and how to best support a child and their family if/when a CRA case is filed. The presentation allowed for participants to workshop through different situational examples and how they might advocate or confront obstacles in the hypotheticals.

(Left) MHAP for Kids Senior Supervising Attorney Eliza Presson giving a training on end of school year considerations at the Eliot FRC in Everett. (Right) Eliza with FRC School Liaison Jackeline Lopez.

MHAP for Kids staff offer trainings on a variety of relevant topics, including ones tailored to parents/guardians on how to assess their child’s academic progress at the end of the year; available summer services; and considerations for end of the school year Individualized Education Programs. 

28th Annual Benefit Breakfast

Save the Date!!! HLA's 28th Annual Benefit Breakfast is on Friday, November 17, 2023 at the Sheraton Boston Hotel. A livestream will be available.

If you would like to sponsor the event or learn more, contact Jennifer Javier, Manager of Donor Relations and Events, at jjavier@hla-inc.org. 

HLA continues to pursue goals around Diversity, Equity, and Inclusion (DEI). Some of these efforts include:

• Beginning to measure the experiences of our Mental Health Advocacy Program for Kids’ clients with policing, school discipline, and emergency departments across different demographics

• Using the data HLA has already collected to assess trends in medical debt burden by race, immigration status, and county of residence

• Holding the first of three staff trainings on microaggressions, led by Tonysha Taylor, the director of Diversity, Equity and Inclusion at the Massachusetts Legal Assistance Corporation

• Using statewide data and HLA’s own demographic data to find gaps in our community outreach and inform the creation of outreach materials specifically to reach these communities