DLC’s work includes investigating abuse and neglect, monitoring where people with disabilities receive services, providing individual representation, and engaging in impact litigation, community trainings and systemic advocacy.

Systemic advocacy means working to create public policies that positively affect the lives of people with disabilities. This requires our staff to listen to and learn about experiences of people with disabilities in a variety of settings, identify patterns, and research solutions and best practices. We meet with leaders of state agencies and comment on proposed regulations.   We help legislators draft bills and advocate for changes in state law. We also testify at public hearings of state agencies and the legislature. DLC also files amicus or “friend of the court” briefs to help courts better understand disability rights issues in pending appellate cases. Finally, we 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 our Systemic Advocacy

 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 stakeholder groups on amicus brief related to rights of blind jurors

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 with the Mental Health Legal Advisors Committee (MHLAC) as amici (with brief drafted by Wilmer Cutler) in Supreme Judicial Court case related to the Dover Amendment and fair housing issues connected to the siting of a residential program providing dialectical behavioral therapy (DBT) and social-emotional learning to persons with disabilities

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 monitoring of Bridgewater State Hospital and system transformation planned for and needed for this DOC facility, and periodic discussion with MHLAC and Prisoners Legal Services (PLS), NAMI, MHA, and other stakeholders regarding the same

Ongoing monitoring of state psychiatric facilities, with an emphasis on rates of restraint and seclusion, human rights violations, the right to fresh air, and needed bricks-and-mortar repairs of substandard conditions

Ongoing monitoring of DDS community residences with an emphasis on community integration, compliance with the upcoming CMS community rule, and needs for alternative and augmentative communication (AAC) for persons who or non-verbal or who have other disabilities related to communication

Monitoring of large institutions (ICF/IDDs) serving individuals with intellectual and developmental disabilities

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 of segregated and subminimum wage settings, analysis of use of 14(c) certificates and wage and hour violations, related legislative and administrative advocacy, and technical assistance

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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