DLC’s work includes systemic advocacy, which entails working to create public policies that positively affect the lives of people with disabilities. For systemic advocacy to be effective, DLC staff must  learn about experiences of people with disabilities in a variety of settings, identify patterns, and research solutions and best practices. Equipped with this vital information, we meet with leaders of state agencies and comment on proposed regulations; help legislators draft bills and advocate for changes in state law; testify at public hearings of state agencies and the legislature; and meet with stakeholders in the disability rights community and other nonprofits to help coordinate resources, understand priorities and goals of the community, and to build coalitions for advocacy work and training.

Examples of DLC’s Systemic Advocacy:

  • Regularly participating in state-wide and national collaborations aimed at identifying and addressing emerging issues facing people with disabilities as a result of the pandemic.
  • With a broad coalition of families, individuals, organizations, providers and advocates, requesting from the Executive Office of Health and Human Services re-adjustment or clarification of the vaccine priority for persons with intellectual or developmental disabilities receiving center-based services through MassHealth day habilitation programs, or Department of Developmental Disabilities (DDS) Community Based Day Supports (CBDS), and their respective staff.
  • Collaborating with partners in extensive advocacy efforts regarding altered standards of care due to COVID-19 and the need for action to avoid the potentially discriminatory allocation or withdrawal of life-saving resources from persons with disabilities.
  • Submitting a letter with several partners to the Department of Public Health urging the adoption of a statewide hospital visitor policy during the pandemic that includes reasonable accommodations for people with disabilities who require a support person to remain with them in the hospital.
  • Joined by a lupus advocate, a medical school professor and a patient organization, submitting a letter to state officials, urging them to protect lupus patients who are unable to get their medication because of prescribing practices related to the coronavirus. The letter was signed by 38 rheumatologists and other medical professionals, as well as other disability rights advocates.
  • Advocating for DDS and DMH to create written protocols about staffing practices to guard against staff transmission to group home and shared living residents.
  • Advocating for I/DD group homes to provide residents access to virtual and outdoor, socially distanced visitation with guardians.
  • Challenging unreasonable restrictions on movement by group homes and shared living providers that serve persons with mental health issues.
  • Calling on the Governor and top public health officials to take steps to protect prisoners with disabilities, which include: reducing the prison population by releasing from custody prisoners with disabilities and serious medical conditions that place them at particular risk of serious illness from COVID-19; providing supplies and services necessary to help prevent the spread of COVID-19 in correctional facilities; ensuring that medical and mental health services for prisoners with disabilities are not interrupted; ensuring that accessible telecommunications are available to prisoners with disabilities; and, providing DLC with relevant written policies and procedures concerning those protections;
  • Collaborating with other organizations and community partners to devise advocacy strategies to promote and protect the rights of persons with disabilities and to create and distribute informational resources concerning their rights during the public health crisis;
  • Testifying before the Architectural Access Board (AAB) on new proposed regulations governing state law requirements for accessible buildings
  • Advocating with the Division of Professional Licensure (DPL) regarding the right of the AAB to hire its own Executive Director, as provided in state law
  • Major advocacy in support of a bill to create a registry for direct support workers for whom there are substantiated claims of abuse or neglect.
  • Supporting adequate funding for investigation of abuse and neglect by our adult protective services (APS) agency, the Disabled Persons Protection Commission (DPPC)
  • Advocating with DPPC for changes in screening and investigation protocols and regulations to better protect victims of abuse and neglect that are non-verbal and therefore less able to communicate a serious emotional and physical injury
  • Commenting upon Department of Developmental Services (DDS) proposed regulations governing positive behavioral supports, seclusion and restraint, Level III interventions, the right to communicate with augmentative and alternative communication, community integration, and the right of the individual to receive visitation from family members
  • Commenting upon proposed DMH regulations relating to restraint, telemedicine, photography, comfort rooms, fresh air, oversight over discharge, and licensing sanctions
  • Embarking on a major monitoring and advocacy project of addressing segregation and lack of community integration in day habilitation programs, and collaboration with The Arc of Massachusetts, the Institute for Community Inclusion (ICI), self-advocates, family groups, providers and MassHealth
  • Supporting family members and advocates for people with Fetal Alcohol Spectrum Disorders (FASD) regarding their lack of agency of tie, and drafting proposed legislation to expand the definition of I/DD to allow DDS to provide services to all persons with developmental disabilities in need of significant supports
  • Collaborating with a coalition of self-advocates, legal services programs and other stakeholders, led by the Center for Public Representation (CPR), in an effort to draft legislation to allow for alternatives to guardianship, particularly supported decision making (SDM) and efforts to train stakeholders and family groups on the potential benefits of SDM
  • Work with the U.S. Attorney’s Office (MA) Civil Rights Unit (CRU) related to rights of deaf jurors and protocols of state agencies in requesting ASL interpreters
  • Work with the U.S. Attorney’s Office CRU regarding rights of D/deaf patients to effective communication under Title III of the ADA and misuse of video remote interpreting (VRI)
  • Participation in monitoring project with Greater Boston Legal Services (GBLS) and MHLAC related to the roll-out of the new Adult Community Clinical Services (ACCS) model and collaboration with DMH regarding the same
  • Ongoing discussions with DMH regarding persons in institutions who are discharge ready and related Olmstead issues regarding the need for community-based alternatives
  • Ongoing systemic advocacy related to wheelchair repair, including the development of self-help materials and systemic discussion with providers and vendors following a regional conference by DLC including providers, funding agencies and persons who use wheelchairs
  • Advocacy with MassHealth related to use of wrongful use of Medicaid local coverage determinations in prior approval determinations of durable medical equipment
  • Community legal education related to assistive technology for persons who use wheelchairs, particularly issues related to use of standing wheelchairs and dangers of pressure ulcers, all part of an ongoing film being done about a former DLC client and DLC’s legal advocacy on his behalf
  • Ongoing negotiations, discussions and collaborations with MassHealth related to accessible medical equipment, electronic visit verification, the transition to ACOs, and other issues
  • Ongoing monitoring and advocacy related to the CMS HCBS Community Rule State Transition Plan, to assure community integration in day and residential settings
  • Participation in State EOHHS Olmstead Advisory Council meetings to advocate for increases in community inclusion and to draw attention to issues for our constituents on lack of access to housing, meaningful day programming, and community supports; oral and written testimony by multiple staff members at DLC given for multiple drafts of Massachusetts’ first revised Olmstead Plan in 10 years
  • Ongoing technical assistance related to use of aversive electric shock and concerns of the disability rights community related to the same
  • Monitoring of disparities in determination of adult eligibility between regional offices within the DDS system
  • Oral and/or written testimony before state legislative committee related to general oversight of DDS and also sexual abuse of persons with intellectual and developmental disabilities
  • Oral and written testimony before Boston City Council on its proposed Language Access Ordinance to ensure that the effective communication needs of people with disabilities in the Commonwealth were included
  • Written comments submitted to the Department of Justice (DOJ) Proposed Rulemaking (PRM) on nondiscrimination of people with disabilities in movie theaters in the provision of captioning and audio description
  • Written comments submitted to the Office of Consumer Affairs and Business Regulation on the Customized Wheelchair Lemon Law Arbitration Program under M.G.L. c. 93 § 107
  • Collaboration with Mass. Law Reform Institute (MLRI) and other legal services programs on written testimony to Department of Homeland Security (DHS) on proposed rule on inadmissibility on public charge grounds
  • Ongoing monitoring and review of federal and state data related to use of seclusion and restraint in schools, particularly the inappropriate or unlawful use of timeout rooms
  • Technical assistance to legislative committee upon request related to pending legislation to further remove DPPC records from the public records law
  • Ongoing review of DMH protocols related to rights of D/deaf patients to effective communication in DMH licensed hospitals
  • Review of protocols for collectivized use of food stamps in DMH community residences and collaboration with legal services programs related to the same; and
  • Participation in various legal services coalitions and court committees, e.g., Language Access Coalition; Administrative Justice subcommittee of Access to Justice Commission; DMH State Mental Health Planning Council; DDS State Human Rights Advisory Committee; Massachusetts Developmental Disabilities Council Guardianship Workgroup; MCDHH State Advisory Committee; MassHealth Disability Advocacy coalition; Disability Advocates Advancing our Healthcare Rights (DAAHR), voting rights and access for people with disabilities throughout Massachusetts, etc.
  • Various community training events on many of the topics listed above

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