Massachusetts Protection and Advocacy
DLC submitted written testimony to the legislature about the crisis in continuous skilled nursing, including the inability of families to find nurses to fill allotted hours, and the flaws in the assessment tool which approves only small fragments of time for nursing coverage.
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FOR IMMEDIATE RELEASE
August 1, 2023
Contact:
Tatum A. Pritchard
Director of Litigation
Disability Law Center
617-315-4612
tpritchard@dlc-ma.org
Disability Law Center Again Recommends Transfer of Oversight of Bridgewater State Hospital to the Department of Mental Health Due to Continuing Health and Safety Risks and Rights Violations
Boston, MA – The Disability Law Center (DLC) has issued its July 2023 report detailing findings and recommendations from its intensive monitoring activities at Bridgewater State Hospital (BSH), including the Bridgewater Annex Units at Old Colony Correctional Center.
DLC covers an array of topics in the report, all of which indicate that health and safety risks and serious rights violations abound at the Department of Correction (DOC) facility run by contractor Wellpath, despite recent reform efforts. For example, DLC finds that: incomplete efforts to address the presence of mold and stifling conditions in housing unit cells leave BSH Persons Served at risk; BSH Persons Served continue to be subjected to violent interventions and illegal chemical and physical restraint and seclusion practices; and access to medical care for many BSH Persons Served remains inadequate. In examining continuity of care issues for current and former Persons Served, DLC discusses impediments to timely and successful transfers to DMH facilities and Mental Health Watch practices in several county correctional facilities.
After almost a decade of monitoring, DLC again urgently calls on the Commonwealth to transfer oversight of the BSH population to the Department of Mental Health (DMH) and to construct a new psychiatric hospital. While DLC offers several interim recommendations to address immediate needs and interests of Persons Served, the report emphasizes that protecting the health, safety, and rights of those with complex mental health needs and disabilities who are involuntarily committed to BSH can only be accomplished with a transfer of power and closure of the infamous facility.
”DLC’s long-term monitoring efforts, supported by Line Item #8900-0001, provide critical insight into the conditions and treatment offered to individuals with complex mental health needs behind the walls of Bridgewater State Hospital. DLC welcomes the bond money now appropriated by the Governor to complete a study of the development a new hospital and urges the state to prioritize the overdue shift from a correctional model to a therapeutic mental health approach overseen by the Department of Mental Health.” Barbara A L’Italien, Executive Director, DLC.
As Massachusetts’ designated Protection and Advocacy, DLC is authorized under federal law to investigate incidents of abuse, neglect, and death of individuals with disabilities throughout the Commonwealth. Line Item #8900-0001 of the FY 2023 Budget provides DLC funding and enhanced legislative authority to monitor the efficacy of service delivery reforms, physical plant, and continuity of care at BSH.
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FOR IMMEDIATE RELEASE
May 8, 2023
Contact:
Tatum A. Pritchard
Director of Litigation
Disability Law Center
617-315-4612
tpritchard@dlc-ma.org
Disability Law Center Investigation Finds Neglect in Cancer-Related Death of an Individual Involuntarily Committed to Lemuel Shattuck Hospital
Boston, MA – The Disability Law Center (DLC) issued a public report today outlining findings of neglect and recommendations concerning the death from cancer of an individual with mental health disabilities who was involuntarily committed to the Metro Boston Mental Health Units at the Lemuel Shattuck Hospital (LSH). As the designated Protection and Advocacy agency for Massachusetts, DLC is authorized under federal law to investigate incidents of abuse, neglect, and death of individuals with disabilities throughout the Commonwealth.
The report discusses the experience of Mr. Harris (a pseudonym), a Black man from Boston diagnosed with schizoaffective disorder, who developed a cancerous lesion on his nose that was not properly diagnosed or treated for more than a year and a half while he was inpatient at LSH. As part of the investigation, DLC’s medical expert concluded that Mr. Harris would have had a high chance of survival had his cancer been treated promptly at or soon after his initial presentation. Unfortunately, LSH provided Mr. Harris medical treatment that failed to comport with the standard of care in a several ways, including by failing to diagnose through biopsy and appropriately treat his lesion; failing to ensure that Mr. Harris received a timely surgical referral to remove the lesion; and failing to obtain informed consent for Mr. Harris’ treatments from his legal guardian, despite medical records indicating that Mr. Harris did not have the ability to provide such consent.
DLC provided LSH, the Department of Public Health, and the Department of Mental Health its initial findings and recommendations for corrective action in 2022. DLC also gave these entities an advance copy of the public report prior to its release. In response to DLC’s findings, LSH conducted a thorough review and ultimately implemented key changes aimed at improving care for LSH patients, including: requiring LSH dermatology staff to photograph skin lesions and wounds for the medical record; requiring biopsies on “all conditions identified as ‘lesion,’ ‘growth’ [or] ‘suspicion of skin malignancy’ prior to initiating treatment; and developing new formal processes and practices to ensure better communication between LSH providers.
DLC recognizes the importance of the corrective action LSH has taken and the many changes in LSH administration since the time of Mr. Harris’ death but believes that more must be done to address the lack of or unequal access to quality medical care that people with mental health disabilities experience every day in our Commonwealth. ”Mr. Harris’ death is a tragic example of what can happen when a health care system fails to be attentive and accommodate the medical needs of a vulnerable individual – an example made worse by the fact that he was institutionalized at LSH to protect him from harm based on to the severity of his mental health disability,” stated Barbara L’Italien, Executive Director of the Disability Law Center. As discussed in the report, it is well-established that many individuals with mental health disabilities experience poor health outcomes and unequal access to health care. Compounding these experiences are the institutional racism in U.S. health care delivery systems and pervasive health disparities for communities of color, women, people who identify as LGBTQIA+, people with Limited English Proficiency, people with low incomes, and people with other disabilities. While the Commonwealth continues to make efforts to improve health equity, barriers persist and must be dismantled, especially in public hospitals like LSH.
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FOR IMMEDIATE RELEASE
February 1, 2023
Contact:
Tatum A. Pritchard
Director of Litigation
Disability Law Center
617-315-4612
tpritchard@dlc-ma.org
Disability Law Center Finds Continuing Systemic Rights Violations and Health and Safety Risks at Bridgewater State Hospital
Boston, MA – The Disability Law Center (DLC) has issued our January 2023 public report summarizing findings and recommendations arising out of intensive monitoring efforts at Bridgewater State Hospital (BSH) from July 2022 through December 2022. The report examines both continuing and new concerns discovered during this reporting period related to facility conditions and BSH policies and practices that negatively impact the rights, health, and safety of BSH Persons Served.
Among the topics discussed is the continuing widespread presence of mold growth throughout BSH, as confirmed by DLC’s expert, despite the costly mold remediation and asbestos abatement efforts the Department of Correction undertook in response to DLC’s 2022 reports. The presence of environmental toxins, in combination with sanitation issues, vermin infestation, recurring power outages, and ineffective heat mitigation efforts during the summer months, put Persons Served at risk. In addition, systemic violations of Massachusetts law regarding chemical and physical restraint and seclusion persist at BSH, resulting in foreseeable physical and psychological harm to Persons Served. Likewise, inadequate language access for individuals with Limited English Proficiency and many impediments to successful continuity of care following discharge from BSH remain unchanged.
DLC’s report also raises two new issues related to treatment of BSH Persons Served. First, information DLC gathered during this reporting period indicates that access to treatment for individuals with substance use disorder is insufficient and BSH providers may be inappropriately tapering and terminating access to Medication Assisted Treatment. Second, DLC presents serious concerns about BSH’s introduction of an “atypical antipsychotic” taken via inhalation as a treatment option for Persons Served, despite the medication’s association with increased risk of bronchospasm and contradictions for people with respiratory conditions and aging individuals with dementia.
In the report, DLC provides sweeping recommendations for addressing the issues examined. Ultimately, however, in keeping with past reports, DLC concludes that protecting PS – people with complex mental health needs who are forced to submit to evaluation and treatment at BSH – requires that the Commonwealth transfer oversight of the population to the Department of Mental Health and commit to building a new hospital.
”DLC’s intensive, long-term monitoring efforts, made possible through the support and expanded authority granted by Line Item #8900-0001, provide unique and critical insight into the treatment of people with complex mental health needs at Bridgewater State Hospital. With the new administration comes a renewed request to prioritize the overdue shift from a correctional model to a therapeutic mental health approach overseen by the Department of Mental Health.” Barbara A L’Italien, Executive Director, DLC.
As the designated Protection and Advocacy agency for Massachusetts, DLC is authorized under federal law to investigate incidents of abuse, neglect, and death of individuals with disabilities throughout the Commonwealth. Line Item #8900-0001 of the FY 2023 Budget provides DLC funding and enhanced legislative authority to monitor the efficacy of service delivery reforms, physical plant, and continuity of care at BSH.
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DLC recently submitted comments on proposed amendments to Continuous Skilled Nursing (CSN) regulations. Read our recommendations.
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FOR IMMEDIATE RELEASE:
Thursday November 3, 2022
Contacts:
Harry Weissman (Disability Policy Consortium ) at hweissman@dpcma.org; 617 977 4084
Kay Schoucair (Boston Center for Independent Living) at kays@bostoncil.org; 617 821 4394
Rick Glassman (Disability Law Center) at rglassman@dlc-ma.org; 617 315 4606
BOSTON – November 3, 2022: Massachusetts wheelchair users and advocates gathered at the State House this afternoon to applaud today’s action of the Senate Ways and Means Committee and the full Senate in supporting legislation to help fix the deeply broken wheelchair repair system in Massachusetts. The measure was reported out favorably by the Senate Ways and Means Committee as S.3136 and was voted upon favorably by the full Senate.
Wheelchair users explained that the wheelchair repair bill is a critical piece of disability rights legislation that would improve warranty protections for people who use wheelchairs in Massachusetts. Consumers and advocates described how wheelchairs and other durable medical equipment devices are often prone to defects and sudden failure. It is commonplace for consumers to be left stranded or isolated in their homes for weeks, or even months, awaiting repairs, unable to get to work, school, medical appointments, the grocery store, and in some cases to move around their own home. At worst, it can lead to serious health complications due to missed medical appointments, temporary solutions that are physically unsafe, and not being able to move one’s body.
The Wheelchair Warranty Bill, S. 3136, would expand warranty coverage to all wheelchairs in Massachusetts for two years; hold providers to firm timelines for responding when a chair is inoperable; provide loaner chairs and reimbursements to consumers while they wait for warranty repairs; and require providers to have access to an inventory of spare parts.
Senator John Cronin, the bill’s lead sponsor in the Massachusetts State Senate, explained why there is a dire need for this legislation. “When an industry becomes consolidated into only two or three providers, we may need guardrails to ensure basic fairness for consumers who have lost their bargaining power. This is especially true for people who use wheelchairs who are often already marginalized and who rely daily on their wheelchairs, to get to work, school, medical appointments or elsewhere in the community.
“Wheelchair repair is a health care crisis in Massachusetts, and we need legislation to address it,” said Harry Weissman, Director of Advocacy at the Disability Policy Consortium. “We’re grateful to the Senate for taking significant action on this issue today, bringing us a major step closer to fixing the broken repair system.”
Joe Bellil, as Vice President of Public Affairs at EasterSeals Massachusetts, spoke to how he’s seen this issue play out in his professional role. “Throughout my career I’ve seen people with disabilities stuck in their beds and jeopardizing their health by not being able to access the care they need, just because their wheelchairs weren’t working. I have seen employees who use wheelchairs be forced to miss work due to needed repairs taking too much time.” A wheelchair user himself, Bellil added, “We don’t need any more barriers to prevent us from being able to be part of the community, and this bill helps us move forward.”
“As I looked back on the difficulties I’ve had with wheelchair repairs over more than ten years – so this is not a recent supply chain issue – what stood out most was that there were problems every single time,” said Ellen Leigh, a resident of Arlington, MA, who uses a power wheelchair. “No exceptions. When I needed help, from replacing tires to motors, repairs have always taken months.”
Ellie Vargas, a power wheelchair user supporting this legislation explained, “I think the bill is very important because myself and many others are experiencing delayed repairs and severe depression from it. While I was heading over to the State House today, a part of my power wheelchair which covers the wiring fell off. Repairs are very necessary to improve our life in general and gives us the opportunity to be part of the community and to work in the workforce. I am always looking for work and if my wheelchair is not up to date and maintained then the opportunity to work like everyone else is taken away from me.”
Bill Henning, director of the Boston Center for Independent Living (BCIL), noted, “BCIL applauds the action of the Senate—those using wheelchairs, fundamental to basic movement and mobility, too long have been subjected to challenges from manufacturers of wheelchairs. These protections are long overdue.”
Barbara L’Italien, Executive Director at the Disability Law Center, stated, “The Disability Law Center views access to a fully functioning wheelchair to be a civil rights issue since the chair allows for access in the home, at work, and for every other daily activity. Too many people have had that basic right of mobility taken away through a repair system which took too long and was not prioritized. I applaud the Senate for addressing this critical issue by setting a standard for warranties and timely repairs and hope the House will follow suit this session.”
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Supporters:
Advocates supporting this legislation include the Disability Law Center, Disability Policy Consortium, Boston Center for Independent Living, Center for Living and Working, Northeast Independent Living Program, Ad Lib Center for Independent Living, Cape Organization for Rights of the Disabled, Disability Resource Center, Southeast Center for Independent Living, Independence Associates, Metrowest Center for Independent Living, Stavros Center for Independent Living, Health Care for All, Easterseals Massachusetts and Greater Boston Legal Services.
Resources:
FOR IMMEDIATE RELEASE
July 29, 2022
Contact:
Tatum A. Pritchard
Director of Litigation
Disability Law Center
617-315-4612
tpritchard@dlc-ma.org
Disability Law Center Again Calls for Bridgewater State Hospital Reform on the Basis of Serious Concerns About Facility Conditions and Rights Violations
Boston, MA – The Disability Law Center (DLC) has issued a public report today summarizing findings and recommendations arising out of intensive monitoring efforts at Bridgewater State Hospital (BSH) from January 2022 through June 2022. DLC’s intensive ongoing monitoring of BSH would not be possible without the support and expanded monitoring authority granted by Line Item #8900-0001.
In the report, DLC highlights serious concerns about conditions and practices that negatively impact the rights, health, and safety of BSH Persons Served (PS), including: lack of clarity from the Department of Correction (DOC) regarding the status of remediation of widespread mold confirmed by DLC’s expert in the last reporting period; continuing illegal chemical and physical restraint and seclusion practices; and inadequate language access for PS with limited English proficiency. DLC also discusses deficiencies in discharge planning, information sharing, and continuity of care for PS discharged to county correctional facilities, Department of Mental Health (DMH) hospitals, and other DOC facilities.
DLC’s sweeping recommendations include calls for the following reform:
“The critical monitoring that DLC does at Bridgewater underscores the need to recognize human rights and support the intensive service needs of people challenged with behavioral health conditions. Eight years into this work, we maintain the critical need to shift from a correctional to a therapeutic mental health model under the Department of Mental Health.” Barbara A L’Italien, Executive Director, DLC.
Since its investigation into the use of excessive use of restraint and seclusion at BSH that began eight years ago, DLC has implored the Commonwealth to place facility operations under the authority of DMH and construct a modern DMH facility to meet the needs of the population.
DLC, as the designated Protection and Advocacy System for Massachusetts, is authorized under federal law to investigate incidents of abuse, neglect, and death of individuals with disabilities throughout the Commonwealth. Line Item #8900-0001 provides funding and enhanced legislative authority to monitor the efficacy of service delivery reforms, physical plant, and continuity of care at BSH.
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One of the largest consumer law problems affecting people with physical disabilities is wheelchair repair. It is commonplace to be left stranded or isolated in one’s home for weeks, awaiting repairs to wheelchairs under warranty and unable to get to work, school, medical appointments, the grocery store, and other places in the community.
Such durable medical equipment devices are highly specialized, each with their own branded parts, and are sometimes prone to defects and sudden failure. The retail market for wheelchairs has become increasingly concentrated, with a very small number of vendors/distributors controlling the entire marketplace. With competition declining due to market forces, the industry has less economic pressure to provide consumers with disabilities with responsive customer service. Many providers also maintain a low volume of inventory and often do not regularly communicate with consumers about the status of parts that must be ordered.
Wheelchair users need the legislature to level the playing field between providers and consumers, shorten repair wait times, and ensure that those who use wheelchairs are treated with dignity and respect.[1]
When this occurs for no reason attributable to the wrongful acts of the consumer, the manufacturer and dealer should stand behind their product.
Under these circumstances, for wheelchairs under warranty, providers and manufacturers should be obligated to assess the wheelchair right away, so that a repair can be done if this is possible, or that parts can be ordered if this is not possible. Instead, consumer typically wait many days or weeks for their wheelchairs to be assessed. Currently, the law provides no specific obligation for the provider or manufacturer to respond promptly.
Similarly, the definition of temporary loaner wheelchair in S. 2567 requires one that is working and able to perform essential functions, but not one that is identical. The concept of requiring a manufacturer to give a loaner wheelchair during repairs is not a new or controversial one. In fact, it is the law in many other jurisdictions, as to both ordinary and CRT manual and power wheelchairs, including Alabama, California, Colorado, Delaware, Hawai’i, Idaho, Iowa, Maine, North Dakota, Ohio, Oregon, Rhode Island and Vermont.
Many of these have response times for providing a loaner wheelchair that are shorter than, or comparable to S. 2567. See, for example, California (when the wheelchair is out of service for 24 hours); Colorado (if out of service for over one day); Oregon (if threat to safety or if out of service for seven (7) days); Rhode Island (same) and Vermont (two (2) business days, unless “extensive custom retrofit” is required, in which case ten(10) days). Again, the four (4) business day timeline only applies when a wheelchair is inoperable.[3]
As a result of Medicare competitive bidding, mergers and acquisitions, and other factors, there has been a radical consolidation within the industry. There is now almost a “duopoly” of only two national dealers/providers who service MassHealth wheelchair customers in the Commonwealth. Moreover, practically speaking, that provider may be selected by the rehabilitation facility and not the consumer. This means the free market is working inefficiently, there is little consumer bargaining power and increasingly, very poor customer service.
In addition to the lack of competition in the marketplace, there are two other causes of low consumer bargaining power. First, as to warranty protection, there is very little effective regulation. Low-income consumers lack the resources to enforce the current inadequate warranty provisions or fall outside of their scope. Despite the very high volume of complaints, we receive about new or relatively new broken wheelchairs, to our knowledge there have been no cases brought to arbitration under the current wheelchair lemon law. The law does not apply when wheelchairs were paid for by MassHealth and Medicare and the existing consumer protections are sorely inadequate. Second, the demand for wheelchairs is inherently inelastic. If gas prices increase, some consumers who drive may place downward pressure on prices by taking public transit, sharing rides, walking or biking. Most wheelchair users have no alternative means of mobility.
The provisions in S. 2567 are largely similar to the wheelchair warranty provisions found in many other states. They are intended to require manufacturers and providers to prioritize the repairs of wheelchair consumers who are stranded in their homes. To incentivize manufacturers and providers to respond quickly, the bill provides that the financial costs of being isolated and immobile should not be borne entirely by the consumer when the repairs are covered by warranty. In addition, when the manufacturer or provider has been unable to fix the same re-occurring problem within a reasonable period, after multiple attempts, the consumer should be able to use lemon law remedies to secure a replacement or refund.
Prior approval is a serious problem for another day, and would require reforms to Medicare and other systems not easily under the control of the Massachusetts legislature.
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Additional Amendments Recommended for S. 2567:
(see track-changed version)
[1] In a Disability Law Center (DLC) survey of 85 wheelchair consumers, 36% said their repairs were not done correctly. 45% reported a delayed response time for the vendor and 40% reported having trouble getting status reports from their vendor.
[2] See e.g., literature published by Lynn Worobey, Ph.D. a professor and researcher in the Department of Physical Medicine and Rehabilitation at human engineering research laboratories at the University of Pittsburgh, including Wheelchair Breakdowns Are Associated with Pain, Pressure Injuries, Rehospitalization, and Self-Perceived Health in Full-Time Wheelchair Users With Spinal Cord Injury. Hogaboom NS, Worobey LA, Houlihan BV, Heinemann AW, Boninger ML., Arch Phys Med Rehabil. 2018 Oct; 99(10):1949-1956. According to a 2016 study by Worobey, in just a six month period, 64% of wheelchair users reported needing at least one repair during that period, of which 28% reported having at least one of these “adverse consequences” happen to them during that period, 18% reported getting stranded due to their wheelchair malfunctioning during that period, and 7% reported not being able to have their wheelchair repaired at all. Worobey, Lynn et al., Type and Frequency of Reported Wheelchair Repairs and Related Adverse Consequences Among People With Spinal Cord Injury at 1755, Archives of Physical Medicine & Rehabilitation, American Congress of Rehabilitation Medicine (2016).
[3] Automobile manufacturers and dealers often have loaner provisions that are more generous, even though wheelchairs may cost more than new automobiles, and wheelchair consumers are far more reliant on their devices. Most likely this is because of a much higher degree of marketplace competition in the automobile industry. Toyota, for example, provides a three year warranty on new cars and provides a loaner vehicle at no charge whenever the automobile cannot be repaired the same day.
[5] The current Massachusetts automobile lemon law provides for relief after three or more attempts or 15 more days out of service. G.L.c. 90 sec 7N ½. It is difficult to understand why a higher burden is placed upon wheelchair consumers given the comparable complexity of components in automobiles and the dependence of wheelchair consumers on their wheelchairs in order to leave their homes and go to work, school or elsewhere in the community.
[6] Examples of media coverage include, https://www.wcvb.com/article/woburn-massachusetts-man-with-cerebral-palsy-has-been-waiting-9-weeks-to-get-his-wheelchair-fixed/36283445# (April 29, 2021) (Story of Woburn man with cerebral palsy, stranded with a heavy broken motorized wheelchair being pushed by his 77 year old mother for nine (9) weeks, with the problem apparently only resolved after WCVB 5 TV contacted the provider.) and a recent two part series by WBUR, https://www.wbur.org/news/2022/03/10/massachusetts-consumer-protection-wheelchair and https://www.wbur.org/news/2022/03/09/massachusetts-broken-wheelchair-disability-mobility-explainer
The Disability Law Center (DLC) is pleased to announce Barbara L’Italien as the organization’s new Executive Director. DLC is the Commonwealth’s Protection and Advocacy agency for persons with disabilities.
Barbara has been a leading advocate at the intersection between politics, law, health care and policy for twenty-five years. She served as both a State Representative and State Senator in the Massachusetts Legislature, focusing on the rights and needs of people with disabilities, seniors, people who are economically disadvantaged and the LGBTQ community. Her advocacy concerning Autism built the service delivery system for educational, social-emotional, and medical support and included establishing and chairing the first Autism Commission and passing comprehensive mandated medical insurance coverage. Barbara also chaired the Elder Affairs Committee, fought for community-based services and passed model legislation to address Alzheimer’s care as well as Consumer Protection laws and dyslexia screening. She is proud of her votes for Universal Healthcare and Equal Marriage. Barbara gave up her State Senate seat to run for Congress in 2018 as a Mom on a Mission to fight for Medicare for All. She has been a Government Affairs Director for the Massachusetts State Treasurer and The Arc of Massachusetts. In recent years, she operated a small lobbying firm that facilitated a partnership with the state to achieve an increase in the community-based elder healthcare workforce through the expansion of an employment training program.
During the pandemic, Barbara served for six months as a Supervisor on the Massachusetts Community Tracing Collaborative and as Senior Government Affairs Advisor for Partners in Health. In the latter position, she focused on partnering with other organizations on an equitable COVID-19 response. Barbara is committed to working to address the systemic inequities that COVID-19 has exacerbated – in health care, employment, housing, education and opportunities for civic engagement – grounded in structural racism as well as discrimination based on disability and socioeconomic status.
“I am honored to join the Disability Law Center in continuing to fulfill their mission,” Barbara remarks. “Working in concert with DLC’s dedicated Board and talented Staff, I look forward to building upon the existing coalition work, advocacy efforts, public profile and financial resources of the organization.”
The Disability Law Center (DLC), Boston Center for Independent Living (BCIL), and the Disability Policy Consortium (DPC) are working together on Bill S. 2567 a bill to improve warranty protections for wheelchairs. We are looking for people who are currently experiencing challenges to repairing their wheelchairs, to highlight the issue and the need for this legislation. We are especially interested in stories about delays caused by the wheelchair provider or manufacturer. If you have experienced delays or other problems in getting wheelchair repairs, please contact Kay S. at BCIL, by email at kschoucair@bostoncil.org or by calling (617) 821 – 4394. Thank you.
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