RSA-509 - Protection & Advocacy of Individual Rights (PAIR) Program Performance Report

Massachusetts (DISABILITY LAW CENTER, INC.) - H240A120022 - FY2012

General Information

Designated Agency Identification

NameDisability Law Center
Address11 Beacon Street Suite 925
Address Line 2
CityBoston
StateMassachusetts
Zip Code02108
E-mail Addressmail@dlc-ma.org
Website Addresshttp://www.dlc-ma.org
Phone617-723-8455
TTY 617-227-9464
Toll-free Phone800-872-9992
Toll-free TTY800-381-0577
Fax617-723-9125
Name of P&A Executive DirectorRick Glassman, Acting E.D.
Name of PAIR Director/CoordinatorRick Glassman
Person to contact regarding reportRick Glassman
Contact Person phone617-723-8455
Ext.

Part I. Non-Case Services

A. Individual Information and Referral Services (I&R)

Multiple responses are not permitted.

1. Individuals receiving I&R within PAIR priority areas63
2. Individuals receiving I&R outside PAIR priority areas9,103
3. Total individuals receiving I&R (lines A1 + A2)9,166

B. Training Activities

1. Number of trainings presented by PAIR staff13
2. Number of individuals who attended training (approximate)787

DLC has made an effort to do specific outreach to underserved communities, particularly to those people for whom English is not their primary language. DLC held a series of trainings around the state which were presented in English plus a second language: Spanish, Cantonese, Haitian-Creole, Somali and ASL. The trainings included areas such as special education and combined a large group presentation followed by an opportunity to meet with advocacy staff on a 1:1 basis. DLC presented these training events in conjunction with various community organizations, legal services and independent living centers. DLC conducts joint outreach with these other community organizations.

Our office remains, we believe, a model program for serving clients with disabilities and accommodating staff with disabilities. This perspective permeates all aspects of office operations, including obvious issues, such as the physical layout of the office, and less widely understood issues, such as protocols for communication between staff, or the accessibility of office software or the office website to users of JAWS or ZoomText.

MA Technology Committee: DLC’s Finance and IT Director Rich Contente is a member of the Massachusetts Technology Committee, a state-wide group charged with setting the technology agenda for Legal Services in Massachusetts. The Committee is focused on using emerging technologies to help serve clients more efficiently and effectively. In addition, the Committee looks at how new technologies can provide opportunities for people with disabilities in the legal services world and in all areas of employment. Rich has given several presentations to the Committee on assistive technologies he and others at DLC use to perform their job functions. In the past year Rich has been focusing on the accessibility of Apple’s iPhone and iPad.

C. Information Disseminated to the Public

1. Radio and TV appearances by PAIR staff6
2. Newspaper/magazine/journal articles4
3. PSAs/videos aired6
4. Hits on the PAIR/P&A website19,014
5. Publications/booklets/brochures disseminated1,600
6. Other (specify separately)41

Narrative

DLC attorneys and advocates provide technical assistance to professionals and other advocates, or Non-Client TA. Information is provided by DLC staff to people who wish to consult regarding the law in a particular area in which DLC specializes, and/or to "brainstorm" regarding a specific client’s possible legal issues. It is considered a non-clinet directed activity.

Part II. Individuals Served

A. Individuals Served

Count individual once per FY. Multiple counts not permitted for lines A1 through A3.

1. Individuals still served as of October 1 (carryover from prior FY)16
2. Additional individuals served during the year63
3. Total individuals served (lines A1 + A2)79
4. Individuals w. more than 1 case opened/closed during the FY. (Do not add this number to total on line A3 above.)1

B. Individuals served as of September 30

Carryover to next FY may not exceed total on line II. A.3 above 8

C. Problem Areas/Complaints of Individuals Served

1. Architectural accessibility2
2. Employment8
3. Program access9
4. Housing9
5. Government benefits/services2
6. Transportation1
7. Education33
8. Assistive technology0
9. Voting0
10. Health care13
11. Insurance0
12. Non-government services0
13. Privacy rights0
14. Access to records0
15. Abuse2
16. Neglect0
17. Other0

D. Reasons for Closing Individual Case Files

1. Issues resolved partially or completely in individual favor61
2. Other representation found0
3. Individual withdrew complaint1
4. Appeals unsuccessful1
5. PAIR Services not needed due to individual's death, relocation etc.0
6. PAIR withdrew from case0
7. PAIR unable to take case because of lack of resources0
8. Individual case lacks legal merit1
9. Other8

Please explain

The individual was not responsive

E. Intervention Strategies Used in Serving Individuals

List the highest level of intervention used by PAIR prior to closing each case file.

1. Technical assistance in self-advocacy0
2. Short-term assistance61
3. Investigation/monitoring0
4. Negotiation10
5. Mediation/alternative dispute resolution0
6. Administrative hearings0
7. Litigation (including class actions)1
8. Systemic/policy activities0

Part III. Statistical Information on Individuals Served

A. Age of Individuals Served as of October 1

Multiple responses not permitted.

1. 0 - 42
2. 5 - 2234
3. 23 - 5933
4. 60 - 645
5. 65 and over5

B. Gender of Individuals Served

Multiple responses not permitted.

1. Females43
2. Males36

C. Race/Ethnicity of Individuals Served

For individuals who are non-Hispanic/Latino only

1. Hispanic/Latino of any race8
2. American Indian or Alaskan Native0
3. Asian3
4. Black or African American12
5. Native Hawaiian or Other Pacific Islander0
6. White56
7. Two or more races0
8. Race/ethnicity unknown0

D. Living Arrangements of Individuals Served

Multiple responses not permitted.

1. Independent29
2. Parental or other family home42
3. Community residential home0
4. Foster care0
5. Nursing home5
6. Public institutional living arrangement0
7. Private institutional living arrangement1
8. Jail/prison/detention center0
9. Homeless2
10. Other living arrangements0
11. Living arrangements not known0

E. Primary Disability of Individuals Served

Identify the individual's primary disability, namely the one directly related to the issues/complaints

1. Blind/visual impairment6
2. Deaf/hard of hearing13
3. Deaf-blind1
4. Orthopedic impairment14
5. Mental illness1
6. Substance abuse0
7. Mental retardation0
8. Learning disability12
9. Neurological impairment3
10. Respiratory impairment4
11. Heart/other circulatory impairment0
12. Muscular/skeletal impairment6
13. Speech impairment0
14. AIDS/HIV0
15. Traumatic brain injury1
16. Other disability18

Part IV. Systemic Activities and Litigation

A. Systemic Activities

1. Number of policies/practices changed as a result of non-litigation systemic activities27

2. Number of individuals potentially impacted by policy changes511,000

Describe your systemic activities. Be sure to include information about the policies that were changed and how these changes benefit individuals with disabilities. Include case examples of how your systemic activities impacted individuals served.

DLC has positively impacted all people with disabilities with their policy change systemic work this fiscal year. The estimated number of people with disabilities in Massachusetts is 511,000. This includes 124,000 individuals with hearing related disabilities in MA, 74,000 individuals with blindness, and 284,000 individuals with mobility related impairments. While many different projects may have positively impacted these individuals more than once, DLC has counted them only once and assumes multiple benefits for each person, as they are being positively impacted by different systemic advocacy efforts made by the Disability Law Center.

Nursing Home and Rehabilitation Center Outreach and Monitoring Project: In the past fiscal year, DLC organized a project to increase our visibility and advocacy for individuals residing in nursing homes and rehabilitation facilities. DLC designed and carried out an outreach and monitoring project of these facilities over the course of the fiscal year. We continue to increase our presence in these facilities throughout the Commonwealth by regular on site monitoring visits.

This project was developed by DLC attorneys and litigation director to respond to a growing need to serve clients in nursing homes and rehabilitation centers who have limited access to legal representation and may have communication barriers. DLC reviewed applicable regulations for nursing facilities regarding conditions and quality of care to determine appropriate standards of care at these facilities. DLC then chose specific facilities to obtain access to and do on site monitoring. These facilities were chosen from a ratings list for Massachusetts nursing facilities. DLC also coordinated with an expert from Greater Boston Legal Services and an advocate for people in nursing facilities, who was invited by the GBLS attorney to attend the meeting, in order to gather more information as to the major issues that impact the nursing facility populations. DLC also researched and compiled various applicable checklists and questionnaires kindly shared by other P&As to use as an aid in our monitoring efforts.

This project has enabled DLC to monitor the environment and quality of care at nursing facilities in different parts of the state, to be available to residents and become known to the staff as well, and to be able to become familiarized with the issues that we should be getting involved with in terms of advocacy, and/or anything further.

Health Care Advocacy: DLC works on a variety of Cross Disability Health Care Access issues. This includes being an active member of the Department of Public Health Health and Disability Partnership Advisory Board, working with advocates across Massachusetts to resolve systemic health care issues and working with NDRN on broader issues. DLC participated in drafting comments to the Access Board Proposed Standards for Medical Diagnostic Equipment. We worked with a broad coalition f advocacy organizations and the hope is that these standards will set the path toward increasing access to needed interpreters, assistive technology and durable medical equipment in hospitals across the country.

Fenway Park Renovations and Policy Changes: Over the past several years, large-scale renovations have been conducted at Fenway Park in Boston, and during FY11 DLC continued its involvement and technical assistance in the planning process, providing guidance and feedback on issues of physical and architectural access as well as visual and communication access. As of last year, the radio play-by-play which is broadcast over the park’s ALD system is now not delayed.

In FY12, DLC continued to consult with and provide technical assistance to the Boston Red Sox organization regarding renovations which have been ongoing at Fenway Park for many years. This year, DLC collaborated with a consultant who specializes in access issues at large stadiums and other sports venues, and who also is a person with a disability, to improve the configuration of two of the accessible seating areas in the ballpark. In addition, the Red Sox agreed to provide additional guidance to employees in the park to ensure that unused folding chairs are not stored on wheelchair ramps, thereby impeding access.

These improvements now make it possible for companions to be seated directly adjacent to, rather than slightly behind, accessible wheelchair locations. The additional training ensures that wheelchair ramps are not obstructed. Individuals with disabilities are now fully integrated at Fenway Park and can enjoy the game, too. At least 500 individuals annually are directly positively impacted from DLC’s work at Fenway Park. This estimate is based on an approximation of the number of individuals who use assistive technology who visited Fenway Park, as well as their companions who were seated next to them. However, with additional training to staff and other attendees, countless more individuals are positively affected and increasingly aware of disability issues.

Affordable/ Accessible Housing Initiative: Removing barriers to retain or obtain housing for individuals with disabilities. Outcome: Removing barriers to obtain and retain housing for individuals with disabilities has been a particular focus for Disability Law Center. First, DLC focused on individual representation on civil rights housing issues that primarily be focused on achieving systemic change and/or having a beneficial impact beyond that of the individual client. Next, DLC focused on providing information and materials to individuals with disabilities with housing issues to promote self-advocacy. DLC leveraged its limited resources by expanding knowledge within the disability community on issues of full inclusion and equal opportunity in an effort to empower people with disabilities to advocate for their individual rights. Finally, DLC focused on systemic and impact advocacy for individuals with disabilities with housing related legal issues. DLC sought to create positive change and promote community inclusion through systemic reform, legislative activities, policy development, training and education.

Description: Although state and federal laws designed to protect people with disabilities from discrimination, such as the Americans with Disabilities Act, the Fair Housing Amendments Act, and M.G.L. c. 151B have been in effect for twenty or more years, individuals with disabilities still face significant difficulties in achieving full inclusion in the economic, communal and social aspects of our society. The Disability Law Center’s Community Team’s Community Inclusion Priority sought to ensure integration to the fullest extent possible for people with disabilities through enforcement and education regarding anti-discrimination laws, removal of barriers to inclusion, equal access to services, programs and activities and provision of reasonable accommodations, modifications and auxiliary aids and services.

Systemic Advocacy, Training and Education: Joint Committee on Housing with People with Disabilities: DLC is a member of the Joint Task Force on Housing for People with Disabilities, created by the Executive Office of Health and Human Services and the Department of Housing and Community Development. The Task Force focuses on housing and supports and services people with disabilities may need to live independently in the community. The partnership of DHCD, EOHHS and this task force will help to bridge the gap in planning and coordinating housing and services for individuals with disabilities and their families. Issues for the task force will include strategies for expanding affordable housing choices in the community, the HUD NOFA for Section 811 vouchers, DHCD’s Qualified Allocation Plan for its housing resources, implementation of the Community Housing Bill, and other matters that impact the housing work we all do on behalf of people with disabilities and their families.

Charlesview Apartments: This is a systemic advocacy case involving wait list procedures and discriminatory impacts on people with disabilities who seek affordable housing and may need reasonable accommodation to have an equal opportunity to apply. Based on information received from the Massachusetts Law Reform Institute, DLC conducted testing and subsequently filed an administrative complaint with HUD alleging violations of the Fair Housing Amendments Act. Although the initial determination was a finding of lack of probable cause, DLC is in the process of requesting reconsideration from the HUD Deputy Assistant Secretary in the Office of Fair Housing and Equal Opportunity.

Qualified Allocation Plan (QAP) Advocacy — Low Income Housing Tax Credits for People with Disabilities: The Low Income Housing Tax Credits (LIHTC) program is the federal government’s largest housing production program. It is run not by HUD, but by the IRS, with allocation decisions made by individual states, according to a state plan called a QAP. Other states, such as Pennsylvania and North Carolina, have successfully targeted resources to people with disabilities by advocating for changes at the public hearing process at which the draft QAP is adopted. We think bringing these types of changes to Mass. is a challenging and long-term prospect. Since 2008, DLC has presented testimony urging the Department of Housing and Community Development to do so. Since then, DHCD has incorporated changes which will help facilitate an integrated housing environment in the Commonwealth, which is consistent with the important principles set forth in the Supreme Court’s Olmstead decision. In 2012 DLC, working with advocates from two Independent Living Centers, once again submitted testimony calling for improvements in the QAP which would increase affordable and accessible housing opportunities for people with disabilities in Massachusetts.

Northampton Housing Authority Disability Awareness Training: In response to a complaint that DLC received about the Northampton Housing Authority, DLC offered and provided training to administrators and staff on the ADA and disability awareness. The training was greatly appreciated and the Northampton Housing Authority Executive Director has asked DLC to repeat the training in the coming year. Following the training, DLC received two inquiries from Housing Authority staff about wanting to assist residents with reasonable accommodation requests, and DLC provided technical assistance.

Tenant Advocacy Project (TAP) Housing Law Training: DLC presented a workshop to 40 TAP advocates on reasonable accommodation and modification requests in housing at Harvard Law School. This training was geared toward increasing capacity at TAP to successfully advocate for clients with disabilities who have housing legal issues.

MA Access Housing Registry Advocacy: DLC joined a coalition of affordable housing advocates to advocate for funding for the MA Access Housing Registry, an online database of affordable accessible housing throughout the state. This advocacy was successful and the Registry was fully funded by the House Ways and Means Committee.

Impact on Low Income Population including number of people benefiting: Advocacy to increase the stock of affordable and accessible housing, or to make it more easily available, has the potential to impact any Massachusetts citizen with a disability. According to the 2010 American Community Survey (1 year estimates), this includes 57,355 children of 5 to 17 years, with hearing vision, cognitive or ambulatory or self-care difficulties, and 354, 376 persons between 18 to 64 with similar disabilities, and 285,422 persons 65 or older, or a total of 697,166 persons.

Transportation Advocacy: This year DLC’s Litigation Director engaged in legal advocacy related to proposed fair increases and service cuts on the fixed route and in paratransit services, for the MBTA, the regional transportation authority for Greater Boston.

Transportation Position Papers: The CDAC partners have produced and distributed two position papers to date. The first paper was in response to the Governor’s Executive Order (530) Statewide Para-transportation Commission. The second was in response to the MBTA’s original proposals to drastically increase the RIDE and “fixed route” fares while reducing service coverage areas.

Other Transportation Efforts: CDAC Partners have met individually with Representatives and Senators at the State House, as well as agency commissioners and individuals from the Governor’s office in a continuous effort to voice our opposition to reductions in transportation funding that effects the entire disability community. (This was the first time that many of our CDAC Partners have ever given testimony at a public hearing, or met with state officials in their capacity as new strong self-advocates.)

We have given testimony at more than twenty of the thirty-one hearings held by the MBTA with respect to fare increases and route reductions. We have given testimony to the MBTA Board of Directors and MA Department of Transportation at public hearings. Much of our testimony has made its way into the newspapers and broadcast media.

The CDAC partners have logged more than sixty hours of direct personal meetings with members of the House and Senate discussing legislative and policy changes and initiatives that would lead to improved paratransit across the state for all people diagnosed with a disability; special emphasis on people with hidden disabilities such as cognitive and/or developmental delays, or diagnoses of mental illness.

CDAC has now been asked to take the lead as a disability organization to work directly with the MBTA and State Department of Transportation to design a user friendly/accessible customer service network that will provide accurate, up-to-date commuter information to people with disabilities.

CDAC has recently been working with the MBTA RIDE program and the vendor running the new MBTA in person assessment program, to put together a series of seminars focusing on educating both consumers and collaborative organizations/agencies about the new in-person Assessment for RIDE applicants that is starting in December 2012.

Collaboration with DLC Advocacy Staff on Transportation Issues: CDAC also worked with the DLC advocacy staff to obtain legal support on a number of issues related to transportation advocacy. For example, CDAC worked with DLC’s Litigation Director on DLC’s comments to proposed fare increases and service cuts, written from a legal perspective. These comments resulted in changes to the MBTA’s original proposals to bring proposed fare increases in line with the requirements of state law. This work involved active collaboration with a variety of disability rights, transportation access and elder organizations, including the Disability Rights and Education Fund (DREDF), Bay State Council for the Blind, the Conservation Law Foundation, and Mass Senior Action Council.

Electronic Access to Internet Resources: This year DLC’s Litigation Director worked with DLC’s Cross Disability Advocacy Coalition and the National Disability Rights Network’s Legal Committee to explore issues related to internet access for people who are blind or have vision impairments. This work included leading a meeting of VIBUG (the Visually Impaired and Blind User Group (www.vibug.org) held at the Massachusetts Institute of Technology to discuss the accessibility of Facebook and other web sites.

Discharge Advocacy Initiative: To increase discharge planning for individuals with disabilities living in facilities. Outcome: Disability Law Center has improved discharge planning efforts for a number of individuals with disabilities who reside in facilities or residential programs. These individuals now fully participate and exercise leadership in decisions about their care and treatment, specifically discharge planning, which promotes community integration. DLC sought to create positive change and promote discharge planning through individual representation, systemic reform, legislative activities, policy development, training and education.

Description: Over the past several years, DLC has collaborated with the NY P&A, Brain Injury Association of MA, Nursing Home Ombudsman Directors, Community Legal Aid, Department of Mental Health, individual clients, and other advocates. DLC has determined that that there individuals with disabilities who are currently placed in MA facilities but have not had proper discharge planning at those facilities. As such, DLC has endeavored to obtain access to and monitor three large facility health care providers in MA.

This fiscal year, DLC investigated 25 individual discharge planning cases and obtained positive results in each of them. DLC also offered information and training to facility administrators and residents, and is currently representing additional clients to ensure proper discharge planning from nursing facilities.

Additionally, DLC continues to monitor these facilities for other allegations of abuse and neglect and to improve policies and practices for individuals with disabilities, including full health care access for individuals who are deaf and/or hard of hearing, blind and/or visually challenged, and individuals using wheelchairs. DLC regularly works with facilities to improve and update policies and practices to bring them into compliance to allow full communication access and physical access in accordance with patient rights and MA laws. In the coming year, DLC will also offer additional outreach to residents and guardians, and training opportunities for Administrators and staff.

Impact on Low Income Population including number of people benefiting: DLC’s discharge advocacy initiative has impacted over 3,500 individuals with disabilities throughout the Commonwealth. Six of the nursing home and rehabilitation facilities that were monitored serve over 900 individuals with specialized needs throughout MA, NY, CT, VT and NH. DLC has also focused on psychiatric facilities throughout the state. DLC’s work in state psychiatric facilities has impacted 600 individuals and our monitoring of private psychiatric facilities has impacted over 2,300.

Emergency Planning: DLC continues to work on emergency planning issues for the disability community. This past fiscal year, DLC consulted with the Registry of Interpreters for the Deaf (RID) to develop and implement its emergency response position statement and policies. This National organization devoted to interpreter services is on the cutting edge of emergency preparedness planning and DLC is helping them to put their vision into practice. Additionally, DLC’s Let’s Make A Plan! personal emergency preparedness workbook and workshop was recognized by National Association of County and City Health Officials as a National Best Practice Model, and information about the workshop was distributed by NACCHO to public health officials across the country.

Collaboration to Create American Sign Language Videos on DLC Website: Disability Law Center is thrilled to provide this video series presented in American Sign Language (ASL). http://www.dlc-ma.org/asl/index.htm We wanted to increase the accessibility of our website and worked closely with Cat Dvar, Esq., CI & CT, SC:L, to plan and film this series. It is specifically designed for the ASL community. We have provided talking points in English for each video for those who are fluent in English.

There are five videos in the series: (1) Welcome to the Disability Law Center; (2) About Disability Law Center; (3) What Disability Law Center Does; (4) Disability Law Center’s Individual Services - What We Can and Can’t Do; and (5) What Happens When You Call the Disability Law Center for Help. See videos number 1 through 5 at: http://www.youtube.com/playlist?list=PLoVdhZDNHREO-yurMjW1-UeIwvxfHIDPJ.

MassHealth Accessibility of Written Materials: DLC partnered with Greater Boston Legal Services, Bay State Council for the Blind and Disability Policy Consortium to investigate, review and monitor barriers to accessibility for individuals who are blind or visually impaired.

Health Law Advocacy Collaborations: DLC staff participate in Disability Advocates Advancing our Healthcare Rights (DAAHR), a response to Massachusetts efforts to create a service delivery and global payment system for people dually eligible for Medicare and Medicare. DAAHR is a collaboration of cross disability community and legal advocates committed to development of a person centered healthcare delivery system that provides healthcare services that maximize function for community living. Activities have included continuing to work on defining what constitutes accessible health care access, the make up of the treatment team, the role of the Long Term Services and Supports Coordinator, the role of Independent Living Centers and Recovery Learning Centers, risk adjustment and many other issues. DLC staff have participated in DAAHR meetings, as well as meetings with MassHealth and EOHHS on the MassHealth proposal and the RFR.

In January 2012, DLC staff worked with GBLS to provide comment to EOHHS Secretary Bigby on the MassHealth proposal. After the proposal was submitted to CMS, we submitted comments to CMS in March 2012, and have provided testimony at open meetings on coverage issues. Much progress has been made on the MassHealth proposal in terms of improvements to services and delivery systems, but much work remains to be done. MassHealth has committed to continuing to work disability advocates on the proposal and its implementation.

DLC staff participate in the quarterly meetings of the AT Advisory Council. The Council is made up of community members and professionals who understand the importance of assistive technology for people with disabilities. A majority of the council members (not less than 51%) are individuals with disabilities who use assistive technology or are family members or guardians of individuals who use AT. Other council members are representatives of state agencies concerned with creating better access for people who would benefit from AT. The Council provides insight and recommendations for "best practices" for how to advance the use of AT. Specifically the Council advises on the Commonwealth’s priorities for federal AT Act funding, and on the design and implementation of state-level and leadership initiatives funded by the AT Act grant. DLC staff continue to collaborate with health care advocates to meet with MassHealth policy staff about every other month. Issues have included the duals demonstration project, IT system issues involving identification of individuals with disabilities who are former SSI recipients, transition issues involved in the national health care reform legislation, and improving access customer service and MassHealth enrollment centers. In April, May and June, 2012, DLC staff worked with DREDF, BCIL, GBLS and other disability rights advocates from around the country to provide extensive comment on the United States Access Board’s proposed accessibility standards for medical diagnostic equipment. The Access Board’s request for comments primarily included technical questions of engineering and design. The group also urged the Board to consider the need for staff training on the location and use medical equipment with individuals with the full spectrum of disabilities and alternate communication needs. We also recommended that the access Board reinforce the need for health care providers to modify existing policies and procedures as needed to ensure that current procedures do not effectively constitute a barrier to use of accessible medical equipment, e.g., appoint scheduling policies, lack of accessible changing areas, interpreter scheduling policies.

DLC has continued to participate in the PCA Coalition, a group that meets quarterly and includes PCA providers, consumers, and both legal services advocates and private attorneys. In the past year, the primary issue has been restrictive time for task assessments and inconsistent determinations. The coalition has met with EOHHS and continues to work on this issue.

Collaboration to Advance Special Education Services: This includes the following work, all of which is closely related: Coalition to Defend Special Education: DLC is a member of the Coalition to Defend Special Education, a collaborative group comprised of private and public interest attorneys and advocates formed to combat legislative efforts to erode parental and students’ special education rights under Chapter 766, the state special education law. The Coalition meets every two months and includes a training topic at each meeting.

Education Law Task Force (ELTF): DLC has continued to participate in bi-monthly ELTF meetings where Task Force members representing children and families gather to network, discuss cases, and receive updates and trainings on changes in law and on pending legislation. In particular, DLC worked with a small subcommittee on preparing public comments to proposed Department of Elementary and Secondary (DESE) anti-bullying law regulations. DLC also continues to participate in drafting and lobbying for state legislation to ameliorate some of the more ineffective and punitive provisions of the current law concerning school discipline. While the legislation was not enacted in the recently concluded legislative session, the ELTF is revising and re-filing the legislation for the upcoming legislative session. DLC also participated in a national Coalition for Dignity in Schools campaign to reform unfair and punitive disciplinary practices. This work is part of DLC’s long-standing priority to prevent the exclusion from school of children with disabilities due to their behavioral disabilities.

Reduction of Restraints and Seclusion in Schools: DLC has worked on efforts to prevent over-reliance on the use of restraint and seclusion in schools. On the national level, DLC participated in strategy conference calls organized by the National Disability Rights Network concerning proposed federal legislation. At the state level, DLC is part of an inter-agency task force to reduce the use of restraint and seclusion in schools. As the only legal advocacy agency in the task force, we have played a major role in guiding the work of the task force. These initiatives are part of DLC’s core work to protect persons with disabilities from abuse.

Special Education Collaborative Group: DLC continues to be a member of the Special Education Collaborative group which is composed of major statewide stakeholders on both sides of the special education issue. The Collaborative Group identified as a shared concern the need for improved transition services and supports for young adults under the special education law. DLC participates on a subcommittee working on state legislation to require Transition Specialists in schools to meet the needs of students with disabilities ages 14-22. The bill was enacted into law this year.

Autism Commission Sub-Committee Ages 18-22 Working Group: The Autism Commission is established to investigate and study current supports and services, identify gaps and make recommendations for strategies that will support the development of appropriate, collaborative and timely supports and services across the lifespan of individuals on the spectrum. The Ages 18-22 Workgroup helped to develop policy, identify existing services, determine gaps and challenges in service delivery, and make recommendations to the Autism Commission about how to improve services for individuals in the autism spectrum.

The Workgroup had outside speakers attend meetings to discuss specifics about transition planning. We also researched best practices in MA and looked to what other states are doing. The Workgroup submitted a final report to the Autism Commission in August 2011. The report provided specific information on our findings and concerns re: self-determination, life skills, vocational services, and postsecondary education, and pointed out gaps in services that need to be addressed. The Workgroup report will be submitted along with the other Workgroup reports to the Governor.

DLC also regularly collaborates with hospital Administrators, Human Rights Officers, staff, service providers, consumer advocacy groups, independent living centers, and other legal service organizations to most efficiently and effectively meet this priority. Whether its working together to obtain the appropriate medical records, case files, or policies that DLC is seeking, collaborating to determine how best DLC can utilize its resources, or how to reach the most individuals we can, DLC partners with others regularly.

Online Transition Manual Update: As noted in last year’s PPR, DLC envisioned and led an effort by three special education and disability organizations, along with Northeastern University School of Law, to create an online Transition Manual for students, parents and advocates. The Manual was an extraordinary success, receiving national attention and widespread praise. By the close of this fiscal year (FY 12), the manual had received over 5,400 "hits."

This fiscal year, DLC embarked on the process of updating the Manual, to reflect changes in the law and new materials which are available in this field. We also were able to improve the manual using edits proposed by readers who submitted suggestions in an online comment form over the past year. Finally, we have begun the process of integrating approximately 15 videos in English, Spanish and ASL into the manual to help users who learn best in this format. Two videos were added to the manual during this fiscal year.

The final version of the Second Edition (available at http://www.dlc-ma/manual) with all 15 videos, was released in December 2012 and will be reported on at the conclusion of FY 13.

B. Litigation/Class Actions

1. Number of individuals potentially impacted by changes as a result of PAIR litigation/class action efforts0
2. Number of individuals named in class actions0

Describe your litigation/class action activities. Explain how individuals with disabilities benefited from your litigation activities. Be sure to include case examples that demonstrate the impact of your litigation.

N/A

Part V. PAIR'S Priorities and Objectives

A. Priorities and Objectives for the Fiscal Year Covered by this Report

For each of your PAIR program priorities for the fiscal year covered by this report, please:

  1. Identify and describe priority.
  2. Identify the need, issue or barrier addressed by this priority.
  3. Identify and describe indicators PAIR used to determine successful outcome of activities pursued under this priority.
  4. Explain whether pursuing this priority involved collaborative efforts by other entities. If so, describe this collaboration.
  5. Provide the number of cases handled under the priority. Indicate how many of these, if any, were class actions.
  6. Provide at least one case summary that demonstrates the impact of the priority.

Priority 1: PAIR General Education Priority 1. To reduce the number of students who are out of school due to unilateral action by school districts. Increase the quality and availability of inclusive programs for students with disabilities, and decrease the number of placements in restrictive settings. To reduce incidents of abuse, particularly bullying and the use of restraint and seclusion in public and private schools. To ensure that students 14 years or older receive appropriate transition goals and services in their IEPs. Special consideration will be given to cases where the family has refused a high school diploma.

2. Based on intakes, previous priority setting meetings and the mandates as a Protection and Advocacy Center, DLC has identified these 4 sub-priorities as being of critical importance. Harsh disciplinary practices, lack of appropriate transition services, failure to include students with disabilities in regular education and incidents of abuse and neglect usually result from lack of teacher training and support, as well as lack of knowledge of best practices in educational methodology. Bringing advocacy efforts which focus on the underlying reasons for these problems is best done on both an individual student and systemic level.

3. Number of students represented to obtain meaningful relief in each of the sub-priority areas. Number of coalition meetings attended and related policy, legislation or litigation accomplishments.

4. DLC’s individual representation of clients did not involve collaboration with other entities. Our systemic work (see Section IV above) and trainings (see Priority 2 below) involved a high amount of collaboration with other advocacy agencies.

5. 22, none of which were class actions.

6. This case examined a blind student’s right to navigate his school corridors without using a white cane. DLC has won him that right. Barry is a 16-year-old legally blind Attleboro student who plays the guitar. Initially, home-schooled by their mother, Barry and his brother raised ducks for their science project, learned Greek, and developed a sense of independence. Knowing their free time began only when they finished their schoolwork, they studied efficiently and thrived. But when the family relocated and Barry entered public high school, he immediately encountered problems. Despite the school’s insistence that he do so, he refused to use a white cane while walking the halls. Two mobility assessments supported the school’s safety concerns. But Barry held firm, the impasse continued, and the school repeatedly suspended him and even threatened a juvenile court complaint. His IEP Team proposed mediation and, in the interim, assigned a sighted aide to accompany him between classes. Barry not only objected, but stopped attending mobility training, taught by one of the most vocal proponents of using the cane. Barry’s mother then called DLC. When DLC counsel called the school attorney, she reiterated the school’s safety concerns and its duty to provide mobility training as part of Barry’s special education services. Rather than recommending additional school suspensions, she planned to file a hearing request at the Bureau of Special Education Appeals. DLC counsel then persuaded Barry and his family to propose a compromise. By then, he had adjusted to the sighted aide the school had assigned. He even agreed to resume mobility training, with additional sessions. But he held fast on not using use his cane, and the final settlement agreement reflects that. He now walks the halls without it, faces no further school suspensions for doing so, and still plays the guitar.

Robert is a 20 year old student from China who is blind. Robert was referred to the Disability Law Center by the Boston Chinatown Neighborhood Center for assistance with re-registering him at his local area High School and its special education program. Robert was un-enrolled from the public schools due to non-attendance issues. Robert is illiterate and had little to no education before he came to the US because the schools in China could not accommodate his vision impairment. He began in special education in the public schools when he came to the US several years ago, but eventually revoked his consent to special education. During his time in high school, Robert had poor attendance and other noncompliance issues. As part of our investigation, we reviewed the student records, spoke with school and agency personnel, and met with the student in person (using an interpreter). Following a thorough review, we determined that the school district had followed proper procedure before un-enrolling the student. The school made many attempts to offer additional supports and services to Robert while he was at school, but he declined services and continued to skip classes. He also refused services from the Massachusetts Commission for the Blind (MCB). We called the Parent Information Center at the local area high school about re-enrolling the student and they informed us that we needed the permission of the Principal for the student to return to school. The Principal agreed that Robert could go back to school and he agreed to talk with him about getting a GED. The Principal met with the student, his parents and sister and a translator and discussed his educational/career options. Robert has since re-enrolled at the High School and has started classes. He will continue with his schooling until he turns 22. The Principal confirmed that MCB will be involved and they will also offer career planning.

Expanding Outreach/ Serving Diverse Populations: Special Education Trainings to Underserved Communities: Working in conjunction with Greater Boston community groups serving immigrant and/or underserved communities, DLC conducted a series of six small interactive trainings and 1:1 legal clinics on special education topics, presented in languages other than English. These included one workshop held in Somali, one in Cantonese, one in Haitian-Creole, and three in Spanish.

Priority 2: PAIR Effective Access and Communication Priority 1. Ensure that students who are deaf or hard of hearing or students who are blind or visually impaired are provided with effective access and communication services in their educational settings.

2. Meeting the special education access and communication needs of deaf and hard of hearing students or blind or visually impaired students is complex, whether a student is placed in a public school or a specialized setting. For this reason, many students do not receive appropriate services and are unable to communicate effectively. The decision as to the most appropriate placement should be based on the educational needs of the student. While it is certainly desirable to place hearing impaired and visually impaired students in the local school district setting, qualified teachers with specialized knowledge of instructional methodologies, training and experience, and required certifications may not be available in a school district. In these situations, short or long term placement at a specialized may be needed to provide the most appropriate and essential educational services for the student. Every case must be considered individually to ensure the best possible outcome and placement.

3. Number of deaf or hard of hearing or blind or visually impaired students represented to obtain meaningful relief.

4. DLC collaborated with independent experts in deaf education and case managers from the MA Commission for the Deaf and Hard of Hearing.

5. 6, none of which were class actions.

6. Lucy is a three year old child with a profound hearing loss. When she aged out of Early Intervention and the family moved to Massachusetts, the parent requested the school district to fund Lucy’s placement at the Clarke School for the Deaf, consistent with the recommendation of independent evaluators. The district, however, placed her in their own pre-school where there were no other children with significant hearing loss. Lucy’s mother and caseworker from the Mass. Commission for the Deaf and Hard of Hearing observed her in the classroom and saw that she did not understand much of what was taking place in the classroom because of her inability to effectively communicate with the children and teaching staff. DLC filed a hearing request with the Bureau of Special Education Appeals. Subsequently, the district agreed to convene a Team meeting. At the meeting, the district agreed to fund Lucy’s placement at the Clarke School for the Deaf where she is reported to be doing very well.

Mary was living at a nursing home when she received a notice of intent to transfer. Mary filed an appeal but when the thirty days allotted to file the appeal had concluded, Mary was told that she was going to be discharged and that she was not going to have an appeal. DLC reviewed the documents and discovered that the appeal notice had listed the wrong address and contact information for the Board of Hearings. DLC advocated for Mary and after DLC became involved, Mary’s due process rights were restored and she was able to have a hearing on the substantive issue. DLC also worked on changing the notice of appeal document so that it reflects the correct address and information for the Board of Hearings.

Priority 3: PAIR Appropriate Treatment Priority 1. To increase the number of individuals with disabilities, including children and adolescents, who reside in the community, facilities or residential programs, who receive appropriate treatment, in which they fully participate and exercise leadership in decisions about their care and treatment, including discharge planning that promotes community integration and ensures timely access to community placement with appropriate supports that guarantee that said individuals are equally protected and planned for during an emergency and obtain appropriate and efficient aid from first responders and emergency department staff..

To protect rights related to admission, informed consent, medical treatment, medication and/or appropriate services.

2. To increase the number of individuals with disabilities, including children and adolescents who have adequate discharge planning to community placement with appropriate supports, and to ensure the right of individuals with disabilities to fully participate and exercise leadership in decisions about their care, treatment and discharge planning, including their rights related to admission, informed consent and appropriate medical and psychiatric treatment and services, and to increase the number of Medically Ill/Mentally Ill (MIMI) beds in the community in order to increase the number of psychiatrically stable individuals to be discharged to the community, and to promote community integration.

3. Number of individuals for whom DLC provides discharge advocacy, including individuals for whom DLC reviews medical records, provides technical assistance, informal advocacy or legal representation.

4. In pursuing this priority, DLC works closely with several entities and agencies. Primarily DLC, when possible, collaborates with the administration, medical, nursing, social work and direct care staff at the facility to address and resolve issues and problems. In addition, because DLC is a law office we often work collaboratively with legal counsel for the facility to facilitate the facilities understanding of DLC’s role as the P&A and our authority to monitor facilities, as well as increasing their understanding of the relevant law. In addition, in cases of this type, DLC works closely with Massachusetts Ombudsman program which is housed within the Office of Elder Affairs. The Ombudsman can be greatly effective in providing insight into the history of the program, and who are the best persons to contact to help address and resolve a problem. Lastly, DLC works closely with the Massachusetts Department of Public Health, which in addition to licensing facilities, promulgates regulations regarding the rights of clients and the responsibility of facilities. DPH also has the authority to investigate facilities and to order remedial action when necessary. Through strengthening DLC’s relationship with these entities, we are able to be more effective in addressing the needs of our clients.

5. 13, none of which were class actions.

6. Carl is a resident in a nursing home who has been there for much longer than anticipated and sought DLC’s assistance to advocate for his discharge. The DLC attorney became involved and worked with a former social worker at the nursing home to encourage and advocate for appropriate discharge planning. Once that social worker had left the job, the DLC attorney started working with the administrator and a newly appointed legal guardian who is zealously seeking an appropriate placement for Carl. The DLC attorney also provided information and forms about the ABI Waiver Program (Carl has an Acquired Brain Injury: Multiple Sclerosis) and successfully got the nursing home to apply for the waiver on behalf of Carl. At this point, with the screening for the ABI residential waiver and another program, the DLC attorney is hopeful that Carl’s supports are working in the right direction and that he will be discharged soon.

Priority 4: PAIR Facilities Abuse and Neglect Priority 1. Reduce the incidence of abuse and neglect of individuals with disabilities in facilities and residential programs. To reduce or eliminate the use of restraint and seclusion in private and public facilities serving individuals with disabilities. To ensure that use of restraint and seclusion in facilities conforms to state law, federal law and administrative regulations, with an emphasis on those instances which will have the largest impact in reducing the use of restraint and seclusion. Reduce the incidents of inappropriate treatment by guardians

2. To ensure access for individuals in facilities and residential programs to adequate and appropriate health, dental and mental health care.

Provide monitoring and analysis of investigation of abuse and neglect allegations, including incidents of restraint and seclusion, conducted by providers, guardians, and state agencies, including hospital emergency departments, and advocate for changes in policies and practices to increase the effectiveness of the investigation of administrative complaints.

Conduct direct, independent investigations into allegations of abuse or neglect, including incidents of restraint and seclusion, of individuals with disabilities. Additionally, assist consumers in appealing inadequate investigations and corrective action plans.

Review selected death investigations, request additional fact-finding as needed and monitor the implementation of required corrective action plans.

3. Number of complaints of abuse and neglect reviewed and investigated

4. In pursuing this priority, DLC works closely with several entities and agencies. Primarily DLC, when possible, collaborates with the administration and direct care staff at the facility to address and resolve issues and problems. In addition, because DLC is a law office we often work collaboratively with legal counsel for the facility to facilitate the facilities understanding of DLC’s role as the P&A and our authority to monitor facilities, as well as increasing their understanding of the relevant law. In addition, in cases of this type, DLC works closely with Massachusetts Ombudsman program which is housed within the Office of Elder Affairs. The Ombudsman can be greatly effective in providing insight into the history of the program, and who are the best persons to contact to help address and resolve a problem. Lastly, DLC works closely with the Massachusetts Department of Public Health, which in addition to licensing facilities, promulgates regulations regarding the rights of clients and the responsibility of facilities. DPH also has the authority to investigate facilities and to order remedial action when necessary. Through strengthening DLC’s relationship with these entities, we are able to be more effective in addressing the needs of our clients

5. 3, none of which were class actions.

6. Bill is an individual with serious physical disabilities who was being prevented from changing his health care proxy because the hospital he was in deemed him incompetent to do so. Bill contacted DLC for help changing his proxy and challenging the hospital’s position. DLC worked with Bill, his family, and the hospital to ascertain Bill’s rights and to limit the hospital’s ability to limit those rights. Bill was able to participate in his medical care decisions and DLC advised Bill and his family about what next steps they needed to take in probate court. This was a successful outcome for Bill who was very happy with his new health care proxy.

Priority 5: Community Inclusion Priority 1. a. Individual Representation on Civil Rights Issues DLC will accept a limited number of cases for individual representation which will primarily be focused on achieving systemic change and/or having a beneficial impact beyond that of the individual client

Focus Areas: i. Employment (priority for representation given to certain types of cases involving larger employers and current employees seeking reasonable accommodation) ii. Housing (priority given to cases in the United Way Mass Bay and Merrimack Valley service area) iii. Public Accommodations (priority given to cases involving potential to benefit large numbers of people with disabilities) iv. Abuse & Neglect (including independent investigations into allegations of abuse or neglect of individuals with disabilities in the community)

b. Provision of information/materials to promote self-advocacy DLC will leverage its limited resources by expanding knowledge within the disability community on issues of full inclusion and equal opportunity in an effort to empower people with disabilities to advocate for their individual rights.

Focus Areas: i. Employment ii. Housing (non-United Way service area) iii. Public Accommodations iv. State/local Government Services, Programs and Activities v. Access to Transportation vi. Deaf Community

c. Systemic & Impact Advocacy DLC will seek to create positive change and promote community inclusion through impact litigation, systemic reform, legislative activities, policy development, training and education.

Focus Areas: i. Olmstead work - avoiding re-institutionalization ii. Hospital Access iii. Entertainment/recreation/health & fitness iv. Abuse & Neglect prevention and policy advocacy, including monitoring and analysis of investigation of abuse and neglect allegations conducted by provider and state agencies v. Training & Education on community inclusion issues vi. Legislative/Policy work on community inclusion issues vii. Access to Transportation

2. Although state and federal laws designed to protect people with disabilities from discrimination, such as the Americans with Disabilities Act, the Fair Housing Amendments Act, and M.G.L. c. 151B have been in effect for twenty or more years, individuals with disabilities still face significant difficulties in achieving full inclusion in the economic, communal and social aspects of our society. The Community Team’s Community Inclusion Priority seeks to ensure integration to the fullest extent possible for people with disabilities through enforcement and education regarding anti-discrimination laws, removal of barriers to inclusion, equal access to services, programs and activities and provision of reasonable accommodations, modifications and auxiliary aids and services.

3. DLC will accept a limited number of cases for individual representation which will primarily be focused on achieving systemic change and/or having a beneficial impact beyond that of the individual client

DLC will leverage its limited resources by expanding knowledge within the disability community on issues of full inclusion and equal opportunity in an effort to empower people with disabilities to advocate for their individual rights.

DLC will seek to create positive change and promote community inclusion through impact litigation, systemic reform, legislative activities, policy development, training and education.

4. The systemic and impact advocacy described above involved collaboration with: The Massachusetts Bar Association Institute for Community Inclusion (ICI) Suffolk University School of Law Housing Authorities throughout MA Independent Living Centers throughout Massachusetts MA Commission for Deaf and Hard of Hearing MA Department of Public Health Nursing Home Ombudsman Directors Program

5. 28, none of which were class actions.

6. Ann lives in an elderly housing apartment run by the Housing Authority. She has a genetic form of muscular dystrophy that prevents her from walking long distances and carrying heavy loads. She has a handicapped placard that allows her to park in a handicapped space, but the handicapped spot was too far from her apartment. She contacted DLC to get help to move her parking spot closer to her unit. DLC took the case and negotiated with the housing authority. As a result of DLC’s advocacy, her spot was moved and she is able to get out more often. Ann is very happy with the assistance she received from DLC.

This was short term assistance that enabled Mitchell, a boy with diabetes, to attend summer camp and participate fully in regular camp activities. Mitchell did not yet know how to monitor his sugar level or adjust the insulin pump he had to wear. That meant he had to travel to the camp nurse several times a day, needing about ½ hour for each visit. Mitchell’s parents asked the camp to consider various accommodations to reduce his travel time for nurse visits. They offered to train someone else to adjust his insulin pump, but the camp refused, citing a state regulation that prohibited this. Next, they asked if the camp could use a cart to take Mitchell to the nurse. This would reduce the travel and allow him to rejoin camp activities sooner after getting his insulin adjusted. The camp again refused, citing other uses for the cart. Mitchell’s parents then consulted DLC. The camp had recently told them he could only attend camp if they obtained a one-to-one aide to stay with him all day. The DLC attorney advised the parents this was unreasonable and posed an unnecessary barrier. She suggested that they obtain medical support from Mitchell’s doctor that he did not need a 1:1 aide. She then suggested that they meet again with camp personnel, well before the summer, to discuss possible accommodations. A few days later, the attorney received the following e-mail from Mitchell’s parents: “Just wanted to let you know that [we] just met with the camp administration. They are going to allocate one more counselor to his bunk this summer and do their best to use the golf carts, etc to make it easier on him. Yeah!! Thanks again for ALL your help on this. We really appreciate it!”

Mary contacted DLC after her PCP referred her to a back specialist and the specialist refused to provide an ASL interpreter for her appointment. Mary is deaf, has CP and needs an interpreter for effective communication. DLC took the case and negotiated with the doctor’s office. DLC explained the law and helped the office understand the process of requesting and hiring an interpreter. The office agreed to provide an interpreter. Mary went to her appointment, received an interpreter and had effective communication. She was happy with this result and got the information she needed to make decisions about her medical care.

Priority 6: 1. Systemic advocacy to improve access to health care facilities and access to MassHealth covered services. Systemic advocacy may include administrative advocacy, impact work, outreach & training, or technical assistance.

Focus Area A: Systemic advocacy to provide full access to medical care for people with disabilities.

Focus Area B: Systemic advocacy to prevent/ameliorate coverage/service limitations in MassHealth programs for people with disabilities.

2. People with disabilities are denied effective medical care when health care facilities are not fully accessible. This includes physical access, communication access, program access, and equipment access. DPH and the ILCs have requested that DLC work on these issues. This Project began by looking at access to Mammography units and then expanded to include all barriers to Hospital Access. DLC completed a training series for providers and is now a member of a number of committees working to further address these issues.

Access to MassHealth covered equipment and services is important to the ability of many individuals with disabilities to live and work in the community. Many individuals are denied items and services they need because they do not understand how to use the provider systems, utilization controls, and appeals processes to assert their rights. There are few resources for legal advice or representation on MassHealth denials for equipment and services. Private lawyers do not take these cases because there is no source of payment, and legal services programs have experienced staff reductions. In addition the budget crisis has resulted in increased scrutiny and utilization review of the MassHealth program as a source of savings and increased interest in creating cost saving service delivery systems.

3. Systemic activities that implement the following Priority strategies: a. Continue to participate in committee work and collaborate with other advocates. b. Provide select STA and representation to address these barriers. c. Provide outreach and training to providers or consumers as needed. d. Continue to assist individuals with access to MassHealth covered items and services by providing STA, by strategically representing a limited number of individuals who have been denied prior approval for MassHealth covered services necessary to living and working in the community (e.g., DME, PCA, dental, transportation, or pharmacy services), and providing developing consumer materials as needed. e. Continue to collaborate with other advocates to improve access to MassHealth covered items and services requiring prior approval. f. Continue to collaborate with other advocates as issues arise that affect access to access to MassHealth delivery systems and access to covered items and services necessary for community living.

4. The systemic work completed under this priority was done in collaboration with the MA Commission for Deaf and Hard of Hearing, other legal service organizations, NDRN, and consumer advocacy groups.

DLC staff have also worked with a large group of advocates, ILC staff, agency staff and individuals to help ensure that MassHealth’s plans to develop policies for individuals with disabilities which are consumer driven and patient centered and cover what individuals with disabilities need to live and work in the community.

5. 7, none of which were class actions.

6. Marie contacted DLC regarding her mother who has ALS. Her mom receives private duty nursing hours which allow her to continue to live at home. Marie called because they were notified that her nursing hours were going to be cut from 122 per week to 112 per week. She was told that there is a cap in hours even if the hours are medically necessary. DLC worked on this case as part of a bigger project to address this limitation. After DLC’s advocacy, Marie was contacted by MassHealth and told that her mother’s hours would be reinstated. The family was very happy with this result.

Health Law Advocacy Initiative Outcome: Decreased the number of children and youth who were recipients of MassHealth and receiving private duty nursing services who had their services cut back.

Description: In the Fall of 2011, DLC began to receive calls from parents of children and youth who were recipients of MassHealth covered private duty nursing services (PDN) about cuts in services. PDN services allow families to care for children with very severe disabilities at home by providing access to skilled nursing services in blocks of time. Most of the calls involved youth aging out of EPSDT coverage. EPSDT is a federal statute that provides for broader access to Medicaid covered care for children and youth under age 22 than is otherwise available. For example, MassHealth limits coverage of PDN services to 112 hours per week. However, due to EPSDT, that limit to individuals under age 22 - if they have proof of medical necessity for more hours. The aging out youth were facing significant cuts in the PDN hours they previously received - without any change in medical necessity. The families with younger children complained that the evaluations of the medically necessary time were not realistic and not based on sufficient evidence. DLC staff represented some, advised others and their advocates on the issues, appeals and aid pending, and gathered a number of the powerful stories of those affected for presentation at a meeting with EOHHS. At that meeting a moratorium was established which protected individuals from further cuts and reinstated the hours of those cut last summer and fall. The purpose of the moratorium was to evaluate the policy and the evaluation process to provide for a realistic assessment of the PDN need. DLC staff continued to work with family groups, preparing them for a meeting with EOHHS and Medicaid where they could speak directly to the policy makers. Medicaid has started to use the new tool, which has improved. More evidence and extensive documentation are now required of the evaluators. In addition, time for skilled assessment of the need for a skilled service is now specifically allowed. Some families are reportedly happy with the evaluations under the new tool but some are not. DLC is currently evaluating our first case of reduced hours using the new tool. We will continue to evaluate its use for potential further action.

Impact on Low Income Population including number of people benefiting: There are about 400-500 children every year receiving private duty nursing hours. About 100 to 150 of these children were affected by the 112 hour cap. The children affected are disproportionately younger in age, and the population is not constant. While some kids are able to move towards more independent living after years of PSN care, the life expectancy of many of these children is limited. Tragically, many will pass away in any given year, and their ranks are replaced by other young children with comparable health challenges.

B. Priorities and Objectives for the Current Fiscal Year

Please include a statement of priorities and objectives for the current fiscal year (the fiscal year succeeding that covered by this report), which should contain the following information:

  1. a statement of each prioirty;
  2. the need addressed by each priority; and;
  3. a description of the activities to be carried out under each priority.

Priority 1: PAIR General Education Priority 1. a statement of each priority; • To reduce the number of students who are out of school due to unilateral action by school districts. • Increase the quality and availability of inclusive programs for students with disabilities, and decrease the number of placements in restrictive settings. • To reduce incidents of abuse, particularly bullying and the use of restraint and seclusion in public and private schools. • To ensure that students 14 years or older receive appropriate transition goals and services in their IEPs. Special consideration will be given to cases where the family has refused a high school diploma.

2. the need addressed by each priority; and; Based on intakes, priority setting meetings and its mandate as a Protection and Advocacy system, DLC has identified these 4 sub-priorities as being of critical importance. Harsh disciplinary practices, lack of appropriate transition services, failure to include students with disabilities in regular education and incidents of abuse and neglect usually result from lack of teacher training and support, as well as lack of knowledge of best practices in educational methodology. Bringing advocacy efforts which focus on the underlying reasons for these problems is best done on both an individual student and systemic level.

3. a description of the activities to be carried out under each priority. Representation: provide aggressive individual advocacy by assisting clients at Team meetings, mediations and hearings before the Bureau of Special Education Appeals.

Collaboration: work collaboratively with legal services and private law firms to address systemic issues through legislation, policy and litigation.

Priority 2: PAIR Effective Access and Communication Priority 1. a statement of each priority; Ensure that students who are deaf or hard of hearing or students who are blind or visually impaired are provided with effective access and communication services in their educational settings.

2. the need addressed by each priority; and; Meeting the special education access and communication needs of deaf and hard of hearing students or blind or visually impaired students is complex, whether a student is placed in a public school or a specialized setting. For this reason, many students do not receive appropriate services and are unable to communicate effectively. The decision as to the most appropriate placement should be based on the educational needs of the student. While it is certainly desirable to place hearing impaired and visually impaired students in the local school district setting, qualified teachers with specialized knowledge of instructional methodologies, training and experience, and required certifications may not be available in a school district. In these situations, short or long term placement at a specialized may be needed to provide the most appropriate and essential educational services for the student. Every case must be considered individually to ensure the best possible outcome and placement.

3. a description of the activities to be carried out under each priority. Representation: provide aggressive individual advocacy by assisting clients at Team meetings, mediations and hearings before the Bureau of Special Education Appeals.

Priority 3: PAIR Appropriate Treatment, Supports & Services Priority 1. a statement of each priority; To increase the number of individuals with disabilities, including children and adolescents, who reside in the community, facilities or residential programs, who receive appropriate treatment, supports and services, in which they fully participate and exercise leadership in decisions about their care, including discharge planning that promotes community integration and ensures timely access to community placement with appropriate supports.

To protect rights related to admission, informed consent, medical treatment, medication and/or appropriate services.

2. the need addressed by each priority; and; To increase the number of individuals with disabilities, including children and adolescents who have adequate discharge planning to community placement with appropriate supports, and to ensure the right of individuals with disabilities to fully participate and exercise leadership in decisions about their care, treatment and discharge planning, including their rights related to admission, informed consent and appropriate medical and psychiatric treatment and services, and to increase the number of Medically Ill/Mentally Ill (MIMI) beds in the community in order to increase the number of psychiatrically stable individuals to be discharged to the community, and to promote community integration.

3. a description of the activities to be carried out under each priority. Provide discharge advocacy for individuals with disabilities, including children and adolescents who currently reside in facilities and residential programs; and to ensure that discharge planning is client directed and that the individual’s right to provide or withhold consent regarding treatment and services is respected.

Monitor the creation and supply of appropriate community placements for all individuals, including those who require specific care and services.

Priority 4: PAIR Facilities Abuse and Neglect Priority 1. a statement of each priority; Reduce the incidence of abuse and neglect of individuals with disabilities in facilities and residential programs.

To reduce or eliminate the use of restraint and seclusion in private and public facilities serving individuals with disabilities. To ensure that use of restraint and seclusion in facilities conforms to state law, federal law and administrative regulations, with an emphasis on those instances which will have the largest impact in reducing the use of restraint and seclusion.

Reduce the incidents of inappropriate treatment by guardians.

2. the need addressed by each priority; and; To ensure access for individuals in facilities and residential programs to adequate and appropriate health, dental and mental health care.

Provide monitoring and analysis of investigation of abuse and neglect allegations, including incidents of restraint and seclusion, conducted by providers, guardians, and state agencies, including hospital emergency departments, and advocate for changes in policies and practices to increase the effectiveness of the investigation of administrative complaints.

Conduct direct, independent investigations into allegations of abuse or neglect, including incidents of restraint and seclusion, of individuals with disabilities. Additionally, assist consumers in appealing inadequate investigations and corrective action plans.

Review selected death investigations, request additional fact-finding as needed and monitor the implementation of required corrective action plans.

3. a description of the activities to be carried out under each priority. To ensure access for individuals in facilities and residential programs to adequate and appropriate health, dental and mental health care.

Provide monitoring and analysis of investigation of abuse and neglect allegations, including incidents of restraint and seclusion, conducted by providers, guardians, and state agencies, including hospital emergency departments, and advocate for changes in policies and practices to increase the effectiveness of the investigation of administrative complaints.

Conduct direct, independent investigations into allegations of abuse or neglect, including incidents of restraint and seclusion, of individuals with disabilities. Additionally, assist consumers in appealing inadequate investigations and corrective action plans.

Review selected death investigations, request additional fact-finding as needed and monitor the implementation of required corrective action plans.

Priority 5: PAIR Community Inclusion Priority 1. a statement of each priority; Individual Representation on Civil Rights Issues with a focus on Employment (priority for representation given to certain types of cases involving larger employers and current employees seeking reasonable accommodation), Housing (priority given to cases in the United Way Mass Bay and Merrimack Valley service area), Public Accommodations (priority given to cases involving potential to benefit large numbers f people with disabilities), Abuse and Neglect (including independent investigations into allegations of abuse or neglect of individuals with disabilities in the community)

Provision of information/materials to promote self-advocacy with a focus on Employment, Housing (non-United Way service area), Public Accommodations, State/local Government Services, Programs and Activities, Access to Transportation, Deaf Community

Systemic & Impact Advocacy with a focus on Olmstead work (avoiding re-institutionalization), Hospital Access, Entertainment/recreation/health & fitness, Abuse and Neglect prevention and policy advocacy, including monitoring and analysis of investigation of abuse and neglect allegations conducted by provider and state agencies, Training & Education on community inclusion issues, Legislative/Policy work on community inclusion issues, Access to Transportation

2. the need addressed by each priority; and; Although state and federal laws designed to protect people with disabilities from discrimination, such as the Americans with Disabilities Act, the Fair Housing Amendments Act, and M.G.L. c. 151B have been in effect for twenty or more years, individuals with disabilities still face significant difficulties in achieving full inclusion in the economic, communal and social aspects of our society. The Community Team’s Community Inclusion Priority seeks to ensure integration to the fullest extent possible for people with disabilities through enforcement and education regarding anti-discrimination laws, removal of barriers to inclusion, equal access to services, programs and activities and provision of reasonable accommodations, modifications and auxiliary aids and services.

3. a description of the activities to be carried out under each priority. DLC will accept a limited number of cases for individual representation which will primarily be focused on achieving systemic change and/or having a beneficial impact beyond that of the individual client

DLC will leverage its limited resources by expanding knowledge within the disability community on issues of full inclusion and equal opportunity in an effort to empower people with disabilities to advocate for their individual rights.

DLC will seek to create positive change and promote community inclusion through impact litigation, systemic reform, legislative activities, policy development, training and education.

Priority 6: PAIR Health/Benefits Systemic Advocacy Priority 1. a statement of each priority; Systemic advocacy to improve access to health care facilities and access to MassHealth covered services. Systemic advocacy may include administrative advocacy, impact work, outreach & training, or technical assistance.

Focus Area A: Systemic advocacy to provide full access to medical care for people with disabilities.

Focus Area B: Systemic advocacy to prevent/ameliorate coverage/service limitations in MassHealth programs for people with disabilities.

2. the need addressed by each priority; and; People with disabilities are denied effective medical care when health care facilities are not fully accessible. This includes physical access, communication access, program access, and equipment access. DPH and the ILCs have requested that DLC work on these issues. This Project began by looking at access to mammography units and then expanded to include all barriers to Hospital Access. DLC completed a training series for providers and is now a member of a number of committees working to further address these issues. Access to MassHealth covered equipment and services is important to the ability of many individuals with disabilities to live and work in the community. Many individuals are denied items and services they need because they do not understand how to use the provider systems, utilization controls, and appeals processes to assert their rights. There are few resources for legal advice or representation on MassHealth denials for equipment and services. Private lawyers do not take these cases because there is no source of payment, and legal services programs have experienced staff reductions. In addition the budget crisis has resulted in increased scrutiny and utilization review of the MassHealth program as a source of savings and increased interest in creating cost saving service delivery systems.

3. a description of the activities to be carried out under each priority. - Continue to participate in committee work and collaborate with other advocates. - Provide select STA and representation to address these barriers. - Provide outreach and training to providers or consumers as needed. - Continue to assist individuals with access to MassHealth covered items and services by providing STA, by strategically representing a limited number of individuals who have been denied prior approval for MassHealth covered services necessary to living and working in the community (e.g., DME, PCA, dental, transportation, or pharmacy services), and providing developing consumer materials as needed. - Continue to collaborate with and provide short term assistance to other advocates to improve access to MassHealth covered items and services requiring prior approval. - Continue to collaborate with and provide short term assistance to other advocates as issues arise that affect access to access to MassHealth delivery systems and access to covered items and services necessary for community living.

Part VI. Narrative

At a minimum, you must include all of the information requested. You may include any other information, not otherwise collected on this reporting form that would be helpful in describing the extent of PAIR activities during the prior fiscal year. Please limit the narrative portion of this report, including attachments, to 20 pages or less.

The narrative should contain the following information. The instructions for this form outline the information that should be contained in each section.

  1. Sources of funds received and expended
  2. Budget for the fiscal year covered by this report
  3. Description of PAIR staff (duties and person-years)
  4. Involvement with advisory boards (if any)
  5. Grievances filed under the grievance procedure
  6. Coordination with the Client Assistance Program (CAP) and the State long-term care program, if these programs are not part of the P&A agency

Income 3060 · US DOE 258,471.16 3147 · Shapiro Foundation 35,000.00 Total Income 293,471.16

Expense 5010 · Gross Payroll 175,611.16 5190 · Fringe Allocation 73,505.86 5210 · Temporary Office Help - Boston 1,796.14 5211 · Temporary Office Help - W Mass 26.36 5220 · Data Processing 323.23 5230 · Audit / Accounting 1,973.99 5260 · Interpreters 5,928.13 5290 · Professional Services 1,941.85 5310 · Staff Travel 1,428.06 5320 · Conferences - Local 125.38 5330 · Conferences / Travel 883.49 5340 · Dues / Memberships 548.27 5350 · Publications 1,326.80 5360 · On Line Services 1,640.23 5370 · Malpractice Insurance 996.29 5410 · Supplies - Boston 1,173.26 5415 · Supplies - W Mass 139.09 5420 · Postage- Boston 307.69 5425 · Postage - W Mass 60.58 5430 · Advertising 141.23 5440 · Reproduction 365.13 5610 · Equipment Rental - Boston 541.06 5615 · Equipment Rental - WM 250.50 5630 · Equipment R/M - Boston 504.37 5635 · Equipment R/M - WMass 80.61 5710 · Boston Office 12,108.82 5720 · W. Mass Office 5,489.22 5740 · Property Insurance 205.53 5750 · Telephone-Boston 1,166.51 5760 · W. Mass Telephone 632.04 5810 · Meetings Expense 465.17 5830 · Litigation Expense 1,700.00 5840 · Bank Interesr/Serv Charge 85.11 Total Expense 293,471.16 Net Income 0.00

Attorney 25,725.06 30% Attorney 4,722.55 9% Attorney 13,416.14 14% Attorney 12,176.11 24% Attorney 4,131.43 5% Attorney 3,444.97 6% Attorney 13,208.21 18% Attorney 3,812.91 5% Attorney 19,044.95 25% Attorney 6,676.45 11% Attorney 6,031.25 12% Director of Administration 4,793.90 10% Director of Finance/IT 11,946.71 10% Executive Director 11,092.16 10% Litigation Director 18,260.64 16% Paralegal 5,763.77 10% Paralegal 74.50 0% Paralegal 5,784.73 10% Support Staff 4,191.82 10% Support Staff 1312.9 9%

Total 175,611.16 2.46

D. Involvement with advisory boards (if any):

Board of Boston Center for Independent Living Boston Housing Authority Transfer Working Group Center Club of Boston CHAPA Committee on Access for People with Disabilities Coalition for the Legal Rights of People with Disabilities Coalition to Defend Special Education DDS Human Rights Advisory Committee Department of Developmental Services Investigation Advisory Committee Department of Mental Health Human Rights Task Force Disability Abuse Prevention Task Force DMH Human Rights Advisory Committee Education Law Task Force Employment Rights Coalition Human Rights Advisory Committee Long Term Care Ombudsman Program Directors Advisory Council MA 21 Coalition Massachusetts Disability Determination Services Advisory Committee Massachusetts Rehabilitation Commission MassMatch Advisory Committee Massachusetts Systems Transformation Grant Housing Subcommittee Paid Sick Days Coalition Personal Care Attendant Coalition Social Action Committee of the Health Task Force of the Boston Bar Association Special Education Collaborative Group State DMH Planning Committee

E. Grievances filed under the grievance procedure:

A grievance was filed in mid-April regarding a student who was not receiving IEP services from his new school district. Staff referred the client to an agency specializing in IEP services. The client filed a grievance with DLC before contacting the referral. DLC responded to the grievant by encouraging them contact the referral agency, then to call DLC back to continue with the grievance if the referral agency was not able to help.

F. Coordination wiht the Client Assistance Program (CAP) and State long-term care program, if these programs are not part of the P&A agency: DLC attorneys also regularly provide Technical Assistance to MOD staff and Nursing Home Ombudsman on issues related to housing, employment, voting, community services and architectural access.

Nursing Home Ombudsman Directors Outreach: DLC works closely with Massachusetts Ombudsman program that is housed within the Office of Elder Affairs. The Ombudsman can be greatly effective in providing insight into the history of the program, and who are the best persons to contact to help address and resolve a problem. DLC is an active member of the Western MA Nursing Home Ombudsman Directors bi-monthly meetings, in partnership with Community Legal Aid (formerly Western MA Legal Services). These meetings serve as a forum to provide legal assistance to the Ombudsman Directors and to coordinate efforts with Community Legal Aid. This ensures that both organization offer different, and complimentary, legal services and eliminates redundancy. The meetings have also led to several individual client referrals from the Ombudsman Directors and have alerted DLC to systemic issues to focus on in the coming year.

Other Coordination: DLC works closely with the Massachusetts Department of Public Health, who in addition to licensing these facilities; promulgate regulations regarding the rights of clients and the responsibility of facilities. DPH also has the authority to investigate facilities and to order remedial action when necessary.

DLC has communicated with the Executive Office of Elder Affairs and the Boston Center for Independent Living about the P&A’s role in the state’s Aging and Disability Resource Center (ADRC) grant. Regarding nursing homes, DLC works closely with the Massachusetts DPH which licenses and has the authority to investigate facilities and to order remedial action when necessary.

Our work on behalf of PAIR eligible client in nursing homes and other facilities requires additional collaboration as well. DLC coordinates with the administration, medical, nursing, social work and direct care staff at the facility to address and resolve issues and problems. In addition, because DLC is a law office we often work collaboratively with legal counsel for the facility to facilitate the facilities understanding of DLC’s role as the P&A and our authority to monitor facilities, as well as increasing their understanding of the relevant access law.

Lastly, Greater Boston Legal Services provides legal services to persons, particularly seniors living in nursing homes and similar types of facilities. Through our collaborative efforts DLC has entered into a co-counseling relationship with lawyers at GBLS where we each benefit from each others expertise. Through strengthening DLC’s relationship with these entities, we are able to be more effective in addressing the needs of our clients.

Other Narrative Information

Coalition of Legal Rights for Persons with Disabilities (CLRD): The Coalition for the Legal Rights of People with Disabilities (CLRD) is a broad coalition of legal and other advocates, including people with disabilities and their family members, united to promote empowerment, liberation, and integration of all people with disabilities in the Commonwealth of Massachusetts. The Coalition seeks to preserve and extend the supports for and rights of people with disabilities through education, legislative lobbying, legal intervention, and systematic advocacy. A DLC Attorney is the Chairperson of CLRD and works to organize meetings, set agenda topics, secure guest speakers, and coordinate advocacy efforts. This past fiscal year, CLRD partnered to education law makers about the potential impact of proposed severe budget cuts on individuals with disabilities. CLRD expressed its commitment to the principals of the Olmstead decision and to community living for people with disabilities by restoring adequate funding to all human services programs. Many of the proposed budget cuts were restored to the budget.

The Cross Disability Advocacy Coalition (CDAC): The Cross Disability Advocacy Coalition (CDAC) (http://www.dlc-ma.org/CDAC/index.htm) held its first meeting on July 27, 2011. The core group started with eight founding partners, representing eight different agencies and disabilities. Over the year, the Coalition grew to now include 42 representatives of a wide range of both agencies and disabilities. The first coalition goal was to determine how best for everyone to communicate with each other in general meetings and on sub-committees. Other projects, workshops and activities the CDAC has been working on are as follows:

- Co-hosted a Social Security seminar for people with disabilities that focused on benefits and going back to work. This was held on October 27, 2011 at the Boston Public Library. - Co-hosted an event that featured Kareem Dale, Special Assistant to the President for Disability Policy, on disability policy issues from a national perspective on October 18, 2011. - Co-sponsored a workshop in April offering information and resources about Social Security, Medicare, and MassHealth. - Offered a Workshop in June 2012 targeted at consumers who are interested in going back to work and using the Social Security Ticket to Work or PASS programs. - Hosted a consumer and Job Developer workshop at One Ashburton Place to discuss disclosure and reasonable accommodations in the workplace. (NOTE: Some of the speakers for the aforementioned workshops have been DLC attorneys.) - Organizing seminars to support people with disabilities looking for the Mass. Housing Finance Agency. - Collaborating with other organizations to explore alternative possibilities to the Model Employer Program. - The 2nd meeting of the Employment Advocacy Committee will be held on September 6th 2012 and includes many other organizations such as BCIL, Easter Seals, BSCB, Spalding Rehabilitation Center, and others, with CDAC taking a leadership role. We will be focusing on ways to promote, legislate, and implement the state equivalent of Federal Schedule (A), which could help increase hiring of people with disabilities on the state and municipal levels. - Exploration, with other advocacy, access and technology centers to create a central depository to help people with disabilities fill out forms required by private, state or federal organizations. - CDAC is continuing the work on an anti-bullying project and expects to have a website launched soon. The focus will be on helping people with disabilities who have been the victim of bullying, and serving as a resource and educational center for those who want to learn about adult bullying. CDAC will be inviting people to submit their own stories as part of the website. - CDAC is presently beginning to launch our website which will be a resource center for people to get information about a range of disability services. - CDAC has provided testimony at the MA. State House to the House Ways and Means committee in support of legislation, and increasing funding for several important programs.

Bridges to Success: This fiscal year DLC conceived of and advocated for state legislation on transition services for young people with disabilities. The legislation would strengthen ties between the special education and adult services systems and require both schools and state human services agencies to work together in a coordinated fashion. The bill is also designed to assess unmet needs in transition, in recognition of the large number of young people with no "agency of tie" who receive virtually no services after turning 22.

Our advocacy on this measure is an outgrowth of substantial amount of individual representation, impact litigation, community legal education and policy work in the area of transition services. While we pursued this advocacy using state funds, we believe that it offers important protections for students who are deaf and/or have hearing loss, use wheelchairs and/or are blind or visually impaired.

Our work in this area included strong partnerships with a number of education and statewide disability rights organizations, which worked closely in drafting the legislation and negotiating with state agencies. While the bill did not pass during its first year, it received a favorable recommendation from its committee following a very well attended legislative hearing with deeply compelling personal testimony from family members. We will refile the measure in the coming fiscal year.

Certification

Signed?Yes
Signed ByRick Glassman
TitleActing Executive Director
Signed Date12/20/2012