Independent Living Division
- IL Division Overview
- Staff Stories
- Facts And Figures
The Independent Living (IL) Movement was developed as an outgrowth of the civil rights movement in the early 1970's by people with disabilities who realized thei issues were similar to other disadvantaged groups. The philosophy underlying the IL Movement holds that people with disabilities should have the right to control their own lives and have access to the same opportunities as others without disabilities.With this philosophy as its cornerstone, the Independent Living Division of the MRC was established in 1985. Early IL programs included Personal Care Assistance (PCA), Head Injury and Independent Living services.
The IL Division has steadily grown and expanded its operations, adding Home Care Assistance, Supported Living, Turning 22, and Protective Service programs, as well as assistance with housing, all for the purpose of improving the quality of life for persons with disabilities in Massachusetts. An Assistive Technology (AT) program was piloted in 2000, providing for the technology needs of individuals with disabilities who have independent living goals. While technology can assist people with disabilities at work, it can also assist people at home to access information via the Internet, conduct banking, shopping and for general communication as well.
Last year, an RFR was released and three providers were identified to meet the AT needs of consumers statewide. The MRC also has an Interagency Service Agreement (ISA) with UMASS-Dartmouth for AT services and training through Project SHARE. The AT providers conduct intake and evaluations of need and provide adaptive hardware,software, training and follow-up services. This past year, 150 people with disabilities received AT services to assist them in achieving their independent living goals.
Several IL programs maintain long waiting lists such as Adult Supported Living, established to provide case coordination services to adults with severe disabilities who have a cognitive,emotional, or sensory impairment. Last year this program was at full capacity, serving 85 individuals who did not qualify for other MRC programs or who were unable to manage a PCA on their own. The goal of all Supported Living services is to assist individuals to live independently in the community, rather than in nursing homes. In fiscal year 2001, the MRC-IL programs collectively assisted 2,475 individuals to avoid institutionalization, thereby saving the Commonwealth $94 million.
This program provides case coordination services through contracts for students who are turning 22 and will need supports when they leave the school system to live independently in the community. Consumers must be under age 22, have a severe physical disability with a mobility impairment and have a 688 Individual Transition Plan (ITP) identifying the need for supported living. Supported Living (SL) incorporates the independent living model of consumer control and choice, encouraging consumers to empower themselves by active participation in decisions affecting their lives. Case coordinators provide services such as helping consumers with organizational skills and problem-solving to find housing, managing, hiring or firing PCA's and budgeting. Approximately 25% of consumers in this program are eventually referred for vocational rehabilitation services from MRC's Statewide Employment Services department. In FY 2001, 41 consumers received case coordination services.
"The hardest job you'll ever love. "I remember this saying from an old public service announcement urging young Americans to join the military . For me though, the phrase applies to a different situation and captures the essence of my experience working in the MRC's Independent Living Program on the 'Rolland case' settlement,"claims Cindy Wentz, Independent Living (IL) Program Coordinator.
The primary focus of Wentz's job this past year has been to facilitate the transition of individuals with disabilities from nursing homes into community living. While IL staff have been doing this for many years, last year Wentz began this work because of the'Rolland case,' a class action lawsuit brought by and on behalf of individuals with developmental disabilities who were living in nursing homes. It is not unlike the Olmstead case where the US Supreme Court determined that publicly funded institution and nursing home residents with disabilities had the right to live in less restrictive community settings.
Says Wentz, "I would be hard pressed to think of any other project that could spark my passion more than this one. I have had a disability since birth and I live, breathe, and eat independent living philosophy every day of my life. I feel truly honored and lucky to do work that's in such close alignment with my personal ethos. After college, I went to graduate school and earned a degree in Rehabilitation Counseling. Hopefully, the consumers for whom I facilitate new living options can find some value, some common chords in my life experiences, as well as my professional skills and knowledge."
A few hundred people in Massachusetts nursing homes in the 'Rolland class' fall under the jurisdiction of the MRC; more than a thousand may be served by the Department of Mental Retardation. "For many years MRC has assisted other individuals to leave nursing homes or chronic care institutions for more independent lives in the community settings of their choice through our supported living programs,"explains Wentz.
"Back in the '60's, before the development of the range of community supports now available, some people were institutionalized by their families. As one woman's sister told me, her parents were getting older and were concerned for their daughter's future. They thought a nursing home would be the safest, least isolating place for her where all of her needs would be met. They only meant the best. Moreover, for whatever reason, even as some of her peers found their way out oft hose settings, this woman never did. Unfortunately, some individuals with developmental disabilities, now in their 50'sand 60's, have lived in these institutions for over forty years," recalls Wentz.
For some people in the 'Rolland class,'something as simple as a hospitalization for a non-life threatening medical problem led to years of nursing home living. In the meantime, well meaning friends and family r professionals may have given up the individual's apartment or slot in a grouphome, leaving the individual with no place to go and too often without the knowledge and resources to re-enter community living.
"It is always gratifying to witness an individual leave a nursing home, become established in a home and begin to make connections in their town or city. The most important thing I do to help make this possible is to listen and understand a person's goals and needs and then pull together the supports and resources to best meet them. This is often a challenging task and always a very time consuming one. Usually, there are many professional 'players' involved with each person, sometimes with conflicting agendas, sometimes not understanding each other,"explains Wentz. "My job has been to troubleshoot, mediate, expedite, advocate, sort out confusion and establish reasonable time frames to keep everyone moving in the right direction at a good pace, all while honoring the consumer's wishes and facilitating their right to make choices to the greatest extent possible. It's a balancing act of respect, diplomacy, innovation and perseverance."
For example, 'Mary' was told that she would be in a nursing home for only about a month until housing could be found for her. She, her husband, and daughter had recently been evicted when they couldn't pay their rent. They moved into a shelter and her daughter, who also has a disability, became a residential student at a special education school. Her husband was having emotional problems that necessitated the couple leave the shelter. Thus, Mary, who uses a wheelchair due to cerebral palsy, went into a nursing home. "I got involved when the local Independent Living Center and other concerned agencies referred Mary to me understanding that she would soon need more services than they could provide in order to return to the community and be successful in maintaining her independence. Shortly thereafter, Mary became eligible for services as a 'Rolland class' member. She had already been in the nursing home for three months and she and her social worker still had not found housing. She was depressed and hadn't seen her daughter since admission. It was clear Mary didn't need to be in a nursing home but she and her husband would need ongoing case coordination to help them with their day-to-day lives," recalls Wentz.
Wentz called in staff from Alternatives Unlimited, a central Massachusetts vocational and residential services provider "Additionally, I checked MASSACCESS, an online database of subsidized housing funded by the MRC and maintained by Citizen's Housing and Planning Association (CHAPA). These efforts paid off as I discovered a wheelchair accessible subsidized two-bedroom apartment and Alternatives Unlimited jumped at the opportunity to assist Mary in applying for and ultimately securing this housing. Mary receives a lot of assistance from Alternatives in recruiting and managing her PCA's, in budgeting the couple's money, and in finding community resources. They helped her acquire needed household goods and set up a network of health care providers in her new community," says Wentz. At MRC's suggestion, the provider is currently helping her apply for fuel assistance. With her living situation more stable, Mary is now thinking about future employment. "She is receiving vocational counseling from an MRC-VR Counselor to explore her interest and aptitude in a position that would entail computer use. Now that 'Mary' has adequate PCA's and case coordination assistance, her husband is also now able to seek employment," says Wentz, with relief.
"For staff in the IL Division, we still have a huge task awaiting us. Every week we are contacted on behalf of individuals in nursing homes who are desperate to get out. We will need to develop new housing alternatives and models of community supports to assist some of these individuals to achieve this goal. We must work within the financial constraints of the settlement and the policies of the various healthcare, financial and housing support systems in the Commonwealth. However, this challenge excites me. It's thrilling to be able to combine knowledge of resources, creativity, and clinical skills to make such positive life changes possible for people. Sometimes it does feel like 'the hardest job I ever loved,' but I look forward to continuing along this path," notes Wentz enthusiastically.
MRC's TAP Program provides training in self-advocacy, social skills building and peer counseling to high school students who have a severe disability, which also includes a mobility impairment. TAP trainers provide services at four Massachusetts Independent Living Centers, in Boston, New Bedford, Fall River, and Worcester, as well as the Massachusetts Hospital School in Canton, MA.
TAP Trainers - individuals who have disabilities themselves - serve as role models, teaching students to become self-advocates and thereby increase their likelihood of being successful moving toward independence. Expansion of the Transition Program to other geographic areas in the Commonwealth depends on increased funding. In FY'01, the TAP provided services to 69 individuals with severe disabilities, helping them avoid institutionalization.
The MASS ACCESS Housing Registry, a program of the MRC, is a database listing all of the accessible, adaptable,and ground floor units in rental properties in Massachusetts. The mission of MASS ACCESS is to match available housing with people requiring the access features for free. The database is administered for MRC by Citizens Housing and Planning Association (CHAPA) and includes over 11,500 accessible units. The database is available on-line at www.massaccesshousingregistry.org.
For more information call Citizens Housing and Planning Association toll free at 1-800-466-3111 Independent Living Centers Program
The MRC Independent Living Centers (ILC's) Program contracts with the eleven ILC's in the state of Massachusetts for the provision of IL services to persons with significant disabilities. The ILC's provide four core services: information and referral, peer counseling, skills training and advocacy. Among the community services provided by ILC's are public information, systemic advocacy and community education and outreach. ILC's provide a range of other services such as the Americans with Disabilities Act accessibility evaluations and technical assistance, support groups, newsletters, recreational events and more, according to the Center's capacity and needs of consumers within their service area. The newest Center, the Vivienne Thompson Independent Living Center in Jamaica Plain, formerly the Minorities with Disabilities Advocacy Center, had a successful first full year advocating and serving consumers in the minority communities of Boston. In FY'01, the Massachusetts ILC's served 10,401 individuals. Several ILC's assisted MRC in coordinating the move of six people with disabilities residing in nursing homes into the community.
Sabrina Cazeau-Class, a Protective Services Investigator for the MRC, can only be sure of one thing when she answers her phone or pager; she's being called to help someone in an emergency. MRC-IL Protective Services staff, largely unknown to the public, serve as a last resort on life or death safety issues affecting hundreds of people with severe disabilities who depend on caregivers to live independently in their homes in Massachusetts. Cazeau-Class, who responds to calls throughout Western Massachusetts, logs up to 2,000 miles a month on the road as she conducts her investigations and follows up with abuse victims in homes, residences, and all too often, hospitals.
The relationship between people with disabilities and their caregivers is often a very intimate one, and crucial to maintaining their independence. Without caregivers, many people with disabilities would need to live in nursing homes or hospitals to receive the daily care they need to survive, limiting their autonomy and costing the Commonwealth millions of extra dollars.
The vast majority of caregivers, either relatives of the care recipient or qualified professionals, diligently carry out their duties with concern and respect. Yet, daily caregiving can be extremely stressful and is always demanding. Caregivers, like anyone else, can go through periods of feeling overwhelmed or burned out. When this happens, the people with disabilities who are the recipients of hostility but who also depend upon their caregivers may feel trapped in an abusive relationship, choosing either to let the abuse continue or possibly risk losing the autonomy of their living situation by making a call to the Disabled Persons Protection Commission (DPPC), reporting the abuse. The abuse may be physical, verbal, emotional, or sexual and may come from a partner, family member or Personal Care Attendant (PCA).
Each investigation includes, at the very least, contacting the reporter of the abuse, the alleged victim and the alleged perpetrator, and may include physicians and other social service or health care providers. "The goal is to get as much information as quickly as possible,"according to Cazeau-Class. The primary concern is always safety, particularly the safety of the alleged victim. "You must always be persistent, and, be respectful," she emphasizes.
Part of the challenge for Cazeau-Class is explaining to the people involved in each case that there are other living options available. Social situations are, by nature, fluid, and after securing the personal safety of the alleged abuse victim, the next goal is to identify available interventions to help minimize the distresses of daily life that can be overpowering in the context of caregiving. "I always tell people when I work with them to use me, ask me questions. I'm a resource working just for them," says Cazeau-Class. By law, the victim of the alleged abuse is contacted within 24 hours of the first call to Protective Services, and the initial report, addressing the substance of the charge, is completed within 7 days. In addition to interviews with the alleged victim and abuser, the investigation may require contacting other family members and involved rehabilitation professionals, as well as researching any relevant case history.
A 1994 graduate of Regis College and French Communications major, Cazeau-Class first became interested in disability issues while working as a Personal Care Attendant for one of her classmates. "I came to understand that just like me, she was struggling to prove herself. People we meet have a tendency to immediately judge us based upon our presentation,overlooking us as an individual." Cazeau-Class worked as a Victim Witness Advocate for the Norfolk County District Attorney after graduation, before coming to the MRC in December of 1995.
According to Cazeau-Class, the nature of the work requires supportive relationships between all the investigators in the Protective Services Unit. "Because it can get so busy, we rely on each other every day. Recently, I urged one consumer to go to the hospital for treatment. Later in the day, a meeting ran late, and I asked a colleague to make sure the consumer had in fact gone to the hospital," she recalls. "The other investigator instinctively knew the urgency of my request and phoned the consumer. A short time later, I contacted the consumer. The paramedics were at her home ready to transport her to the hospital. It may not sound like a big deal, but we all share this tremendous sense of responsibility for someone's life, so that type of support from a colleague makes all the difference. " We never know how a complaint will ultimately be resolved. The needs of the individual with a disability always will dictate what happens to them. Many consumers end up working with MRC Protective Services staff to ensure a decrease in their level of risk. I often refer consumers to our Home Care Assistance Program and the Home Modification Loan Program as well. I have referred others to the Department of Mental Health and appropriate Health & Human Services agencies," explains Cazeau-Class. Ultimately, some consumers go directly to law enforcement authorities for criminal prosecution for the most serious cases of abuse and/or omission. "We're not in the business of making everybody happy" realizes Cazeau-Class, " we're in the business of helping people save their own lives, and that's very hard. The goal is to never take the job home, but to just keep moving ahead. Sometimes that is easier said than done. On occasion, I find myself wondering if someone I just visited during the day is safe for the night or the weekend when she goes to bed," admits Cazeau-Class.
The Statewide Head Injury Program (SHIP) serves individuals who have a traumatic brain injury and need individualized supports in their home and local community.The goal of these services is to promote and maintain the independence of the consumer within their community, avoiding placement in a nursing home or other institutional setting.
"It has bee n demonstrated that individuals with TBI are most likely to benefit from skills training and practice when done in their natural setting," explains Kamen, Director of SHIP. "Thus, our services often include case management to help individuals deal with things like evictions, access substance abuse treatment or necessary medical services, and to facilitate neuropsychological evaluations, psychotherapy or other therapies such as physical therapy, occupational therapy, and the like."
Although there is a high incidence of TBI in the Latino, African American and Asian communities, 1999 SHIP statistics revealed these groups were seriously underrepresented and underserved. In 2000, Kamen applied for and was awarded a 3-year $200,000 grant from the Health Resources and Service Administration to implement the Traumatic Brain Injury Multicultural Outreach Project (TBIMOP). The purpose of the Project is capacity building of both minority community organizations and SHIP to increase outreach to individuals with TBI from diverse cultural backgrounds and to create or enhance culturally sensitive services, information, and supports for TBI survivors and their families. Maria Cristina Vlassidis, who joined the agency in September 2000 as the SHIP Multicultural Outreach Project Coordinator, explains, "I have witnessed a terrific increase in the number of referrals to SHIP of people from culturally diverse backgrounds in just less than one year. Before the start of the TBI Multicultural Outreach Project, SHIP applicants from Asian descent averaged only two per year. Now that number has risen to six." Motivated by her work, Vlassidis explains, "We strive to reach out to populations which have been historically underserved, and to those new ones whichare already enriching the fabric of our local neighborhoods. As Project Coordinator, my main function is to facilitate communication among very diverse groups."
This past year, the TBI Multicultural Outreach Project achieved one of its goals by translating various Massachusetts Brain Injury Association brochures and informational materials into Spanish, Portuguese & Chinese. These materials are distributed by the Project partners, including South Cove Community Heath Center, Martha Eliot Community Health Center and Harvard Street Neighborhood Health Center, serving the Chinese, Latino and African-American communities, respectively. "These materials have been praised by the Human Resources and Services Administration's Maternal and Child Health Bureau and they have supported their distribution nation-wide," claims Vlassidis, pleased with their success.
Every week, Vlassidis and the project partners take the TBI Multicultural Outreach Project "on the road" by conducting presentations for various constituencies such as seniors at the Chinese Golden Age Center, ESL students at the Asian Civic Association, bilingual domestic violence counselors at the Latino Health Institute, clinical staff of the Metro Boston Asian Collaborative, public housing tenants, and Latino parents and their children, among others. "I have also found great success in using the media to promote TBI awareness and the services provided by MRC/SHIP. Periodically, I conduct live radio and cable T.V. shows in Spanish in collaboration with the Department of Public Health's Office of Minority Health and the Latino Health Institute. We do this so everyone can have access to the information, regardless of their literacy level.
"Last year, more than 500 people with a TBI in the Commonwealth received services from SHIP. Of these, 120 people received intensive case management and community support services at an approximate cost of $6,000 per person, per year. "Considering the high cost of institutionally based care, the savings to the Commonwealth was quite significant," explains Kamen. There is a wide range of both physical and behavioral impairments associated with brain injury, requiring life long services and supports. These services are often not reimbursable through third party payers because they are community based, as opposed to medically necessary. They include structured day programs, respite care, transportation, substance abuse treatment and cognitive retraining, to name just a few.
"The Trust Fund for Head Injury Treatment Services was established in Chapter 138 of the Acts of 1991," recalls Kamen, which assessed a $125 fine against people convicted of driving under the influence. While this Act attempted to cover the costs of an ever-increasing number of newly injured citizens, it could not adequately keep pace with the rising cost of providing the complex array of services people with TBI really need. "Thankfully," explains Kamen, "TBI advocates worked with the Legislature and the Administration to create a $25 speeding ticket surcharge which was put into a retained revenue account to further support our program. It took a lot of courage to establish this account and it has helped enormously to assist in serving people on our waiting list."
"MRC's SHIP was also recently awarded a federal recreation grant to promote collaboration with community-based multicultural organizations in order to provide direct services to TBI survivors from diverse cultural and linguistic backgrounds," boasts Vlassidis. Plans include developing a culturally competent recreation curriculum, providing training to a diverse group of providers, and engaging in cross-training to learn about the various cultural diversity issues impacting their delivery of services as well.
"When people ask me what I do," ponders Vlassidis, "I tell them 'I'm sort of a match-maker'; I bring people together. I try to facilitate communication among individuals from very diverse cultural and linguistic backgrounds and I encourage them to celebrate their differences and build bridges. I encourage partnerships that will continue to refine their capacity to provide community-based services for people with TBI, beyond the life span of this particular grant. I am proud to be part of MRC/SHIP, knowing that we are committed to continuous improvement in the field of cultural competence."
SHIP ADVISORY BOARD MEMBERS
|Number of consumers who received services||125|
|Number of new service plans||314|
|Number of consumers provided paid services||77|
|Number of investigations||239|
|Head Injury Services|
|Number of consumers who received service coordination||520|
|Number of new applicants||206|
|Number of services purchased for consumers||561|
|Home Care Services|
|Number of consumers served||1792|
|Number of new cases opened||546|
|Number of hours of services provided||248,610|
|Turning 22 Services|
|Number of consumers who received services||90|
|Number of consumers in Supported Living services||42|
|Number of new Individual Transition Plans developed||4|
|Number of new intakes||10|
|Supported Living Services|
|Number of consumers who received services||68|
|Number of consumers on waiting list||27|
|Number of new listings||379|
|Number of vacancies||547|
|Number of housing calls to Independent Living Centers||5,952|
|IL Center Services|
|Number of consumers who received services||10,401|
|Number of Information and Referral calls||10,093|
|TOTAL IL CONSUMERS SERVED||29,804|
This information provided by the Massachusetts Rehabilitation Commission.