READINGS
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Living in the Communityby James E. Sturdivant September 2000 James E. Sturdivant, Lori E. Baskette and Jamey E. George describe the elements of their successful program to move people out of nursing homes and into the community:
The Issue - Let Freedom Ring In Maryland, approximately 9.7% of nursing home residents are under the age of 65. The issue we, at MCIL Resources for Independent Living (MCIL) in Baltimore, MD, are trying to resolve is the unnecessary placement of non-elderly persons who have incurred severe disabilities, through trauma, disease or complications at birth, into nursing homes against their will. Often times, the family members are well-intentioned, but become overwhelmed and believes that they cannot care for the individual. In many instances there are no family members who can care for the individual. In addition, many individuals find themselves in nursing homes because they lose their place in the community through foreclosure of their home or inability to pay rent due to being in rehabilitation and/or unemployed. Finally, many individuals have found themselves in situations where their Social Security benefits/assets are claimed by the nursing home to cover the cost of their stay. The placement in a nursing home of an individual who can lead an independent life in the community is both inappropriate and costly:
Once a person is placed in a nursing home, it is difficult, if not impossible, to get out. This is especially so if the person relies on a small monthly allowance for any and all personal items (e.g., clothing, cigarettes, toiletries, candy, private telephone line, cable TV, durable medical equipment, and any other incidentals). If the consumer does manage to save their allowance, and they have Medical Assistance, they can't save more than $2,000. If they do, they risk losing Medical Assistance and, therefore, could be discharged from the nursing home. The sad result is they are left homeless. To further complicate a difficult situation, Medicare and Medicaid do not cover the cost of durable medical equipment of nursing home residents. Consequently, they will never be able to save the monies necessary to get out of the nursing home (e.g., for security deposits for housing, utilities, telephone, furniture). A Viable Program with Funding Funding for MCIL's Living in the Community program was obtained through a grant from the United Way of Central Maryland and a Community Development Block Grant from Baltimore County Government. Obtaining the funding was not easy -United Way questioned why a person would want to leave a nursing home, and Baltimore County initially just threw the request in the trash. Finally, when we met with United Way's independent living panel, we took two individuals whom we previously assisted to return to the community, and one individual who was still imprisoned in a nursing home. This allowed us to explain to the panel what it was like to be in a nursing home and how much better it is to live in the community. The panel was impressed and we were awarded funding for the program. The Baltimore County funding was finally awarded after the chairperson of the County's Commission on Disabilities intervened on our behalf. The United Way funds were used for start-up costs for an apartment, including security deposit, first month's rent, gas, electric, and telephone deposits, food, personal assistance services (PAS), prescriptions and rental of medical equipment if needed. Furniture was purchased in a collaborative effort with second-hand furniture stores such as Goodwill, and also with other nonprofits such as United Stand against Multiple Sclerosis and Catholic Charities. If the Social Security paperwork had not been processed following the first month of discharge, a check equivalent to one's SSDI / SSI benefits was issued to the consumer using these funds. The Baltimore County funds were used for the purchase of assistive technology and adaptive equipment. These purchases would not be covered by medical insurance while the consumer was still in the nursing home, and many individuals could not leave the nursing home without this equipment. This made for a smoother transition by the individual with a disability to the community. Types of assistive technology purchased included power wheelchairs and scooters, environmental control units, remote control speakerphones and stairglides. Adaptive equipment included hand-held shower nozzles, bathtub handrails, transfer tub benches, shower chairs, a full size hospital bed and ramps. These funds could be used to purchase other types of assistive technology and adaptive equipment that would enable persons with disabilities to reach or increase their level of independence in the community. These other items included augmentative communication devices, universal control switches, CCTV, voice-activated equipment for the visually impaired, visual aids for the hearing impaired, reachers, adaptive dishes, utensils, cookware and kitchen equipment. Implementation of an Effective Program In order to implement this program, we visited many nursing homes, talking to administrative personnel and other staff about our "Living in the Community" program. Social workers assisted us in identifying persons about to be discharged, which included many individuals with no place to go. They provided some brief background history about the consumer, his/her disability and family. Physical and occupational therapists provided input as to independence levels, transfer capabilities, equipment needs assessments of individuals wanting to live in the community. Consultation with these therapists also provided information as to the various levels of care that might be needed by consumers, as opposed to what they could do for themselves. A better understanding of what supports the individual would need in the community was also accomplished by working with family members where applicable. To ensure maximum success, we worked diligently with consumers to prepare them for transitioning to the community. This included the four CIL core services. Based on a needs assessment done in the nursing home, consumers received training in independent living skills, including meal planning, food preparation, personal hygiene, money management, home safety, tenant responsibilities and socialization skills. Resources were provided to consumers to improve and increase their independence levels (i.e., paratransit, Division of Rehabilitation Services (DORS), schools and trainings in the area, and employment and volunteer opportunities). Peer mentoring was provided to nursing home residents by staff members and volunteers with disabilities to alleviate concerns and fears of returning to the community. In many instances, the newly disabled residents had not experienced the reaction of others in the community to their disabilities. They had not had the opportunity to experience and adjust to living within their own community and facing attitudinal barriers. Through advocacy, we acted on their behalf to promote individual and systemic changes. Consumers learned their basic civil rights so that they could advocate for themselves. Through years of experience working with Wallace H. Campbell Management Company, we were often afforded the opportunity to be notified first of affordable, accessible housing vacancies. This allowed us to place consumers in housing in a prompt manner. Utilizing our housing registry, which consists of listings and a database that we created and compiled, we began to develop relationships with other apartment management companies and landlords. Through collaboration with Baltimore County Department of Housing, we managed the HUD Section 8 mainstream program. This program consisted of 100 Section 8 vouchers specifically earmarked for persons with disabilities. We assisted consumers with screening and gathering all information needed for the interviews and also attended interviews to advocate on behalf of consumers. As a result, some of our consumers qualified for Section 8 vouchers. Some consumers were even able to take advantage of the Baltimore Regional Housing Opportunity Program, which receives some HUD funding and assisted them with locating housing and with security deposits. Once out of the nursing home, our goal was for the MCIL Disability Advocates to continue working with consumers, providing the four core services as well as community support services to empower individuals to lead self-directed, independent and productive lives in the community. The community-based services included beginning or returning to school or work, utilizing DORS and job fairs. Department of Social Services provided food stamps, Medical Assistance, and help with gas and electric expenses. Transportation needs were handled by MCIL contract with Maryland Mass Transportation Administration. Travel trainers registered persons for the paratransit system or trained individuals to use the fixed-route bus service. The transportation training also allowed for social and/or volunteer opportunities that greatly enhanced independence, prevented isolation and promoted total inclusion in society. Results and Follow-up Our success with the program was astounding. In our original grant application, we stated that we would "free" six to ten persons with disabilities between the ages of 18 and 64 who were needlessly "imprisoned" in nursing homes. However, because of the resourcefulness of the staff, we were able to free 16 "POW's" into the community, an impressive 160 percent of the original goal. To evaluate the success of our program, we utilized the services of two occupational therapy college students to compile a satisfaction assessment survey and interview consumers who had transitioned from nursing homes to the community. The Canadian Occupational Performance Measure (COPM) was used by the surveyors as a guide to formulate questions for the satisfaction survey. The Model for Health Education Planning (MHEP) was used to structure the MCIL program initiated by the students. This model would allow for adjustments to be made to the program on an as needed basis as the program progressed. The program was based on secondary data collection as obtained through staff interviews, consumer interviews, chart and literature reviews. The information was compiled to determine which of our offered services have been most beneficial to consumers. Below are some of the questions asked of consumers in the survey:
Another measure of satisfaction was letters from consumers stating how this program had enhanced their quality of life. These are a few of their comments: MCIL makes love, care and independence possible so you can do what you need to do. MCIL helped me overcome hurdles I thought were impossible. I have my own freedom-nobody to tell me nothing, like when I wake up or when I eat. I think they're (MCIL) wonderful. If it wasn't for them, I never would have gotten out. I got my own freedom, better food and everything. Get up when I want, go to bed, do what I want. This apartment- it gives me space, it's the best part of my life. These letters are not only used to document our success, but they are also used for other grant applications in order to help continue to free our people from imprisonment in nursing homes. Here are some examples of what some consumers are doing since returning to the community:
In the two years that the "Living in the Community" program has been funded, two separate funds were maintained. One set of funds was for start-up costs for housing and the second fund was for assistive technology. We feel that it would be most effective to combine all sources of funding to meet the requirements of the program. As an example, this year we ran out of the start-up cost funding and were only able to use the assistive technology funds. The only way we could get someone out of a nursing home was if they had an existing residence to go to. Most individuals trying to get out of a nursing home need all services. We have formed a waiting list of these individuals and have applied for funding from the ABELL Foundation that we hope will accomplish our goal. We are also advocating for legislators in Maryland to support the MICASSA Bill, S. 1935. This bill will allow individuals with disabilities to use their Medicaid funding to choose whether they want to live in the community or in a nursing home. It is our hope that MICASSA will be passed into law and individuals who can and want to live in the community will be freed from nursing homes to live full and productive lives. Contact Information: MCIL Resources for IL About the Authors James E. Sturdivant came to the disability community completely
by accident, or maybe he was just destined to do so. After caring
for his mother who had terminal cancer, he decided to seek a future in
health care. After successful completion of paramedic training,
he decided that being a paramedic was not for him; he didn't want to just
patch people up and never see them again. James saw an ad for an
attendant for two people with multiple sclerosis. Not knowing what
multiple sclerosis or being an attendant was, he applied for and got the
job. James quickly learned what an attendant was and was certified
by Red Cross as an geriatric aide. The two and a half years as an
attendant was truly a learning experience, and James approached his supervisor
at the time and explained that he had other talents and college experience.
His supervisor at the Multiple After working with the MS Society for 13 years, James, came to work for MCIL Resources for Independent living where his eyes were opened to the independent living philosophy. Like so many of us, James had known only one disability and was stuck to that mode of thinking and dealing with persons and issues related to disabilities. At MCIL, James became the PAS Coordinator complimenting their PAS Program which taught persons with disabilities to be take more control of the services they receive. Because Maryland's attendant care programs offer no choice, the PAS program quickly turned into the nursing home program and James, under direction of the CIL Director, applied for funding to return persons with disabilities residing in nursing homes to the community. This is where James really found his niche (being a person of the 60's-70's, James-sees this whole thing as civil rights advocacy and feels right at home.) Lori E. Baskette has been working with people with disabilities since 1987. For almost two years she has been a disability advocate with MCIL Resources for Independent Living. During this time she has become involved in grassroots advocacy, organizing people to attend rallys at both the local and national levels and working with consumers one on one to provide the four core services of advocacy, information and referral, peer counseling and independent living skills training. A member of MCIL's Living In the Community team, Lori has successfully assisted getting people out of nursing homes and back into the community. Lori is involved working in community outreach projects and conducts residential and commercial accessibility surveys. She is also a member of the Maryland Disability Law Center's Housing workgroup for Baltimore City and the Baltimore County Commission on Disabilities Housing Committee. Jamey George has been working with individuals with disabilities in the independent living movement since 1995. Jamey first began her work in this area for MCIL Resources for Independent living's satellite office in Cumberland, Maryland, which later became Potomac Highlands Center for Independent Living (PHCIL). Over the past three years, she has worked as a Disability Advocate for MCIL. Her goal is simple and direct - to help individuals with disabilities to live full and independent lives in the community. Jamey is also currently the Treasurer of the Maryland Statewide Independent
living Council. A major focus of Jamey's job is to help create positive
change through system advocacy at all levels. By encouraging better
understanding and effecting change at the highest levels, she is better
able to improve life in the community for all people with disabilities.
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