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Copyright © 2003 Ohio Legal Rights Service. All rights reserved.
Greg Moody
Executive Assistant for Health and Human Services
Office of the Governor
77 South High Street, 30th Floor
Columbus, Ohio 43215
December 5, 2003
Dear Mr. Moody,
Thank you for attending the Let Olmstead Ring! Public forum last week. We hope that you heard, as we did, the knowledge, commitment, and sheer power of the words that were spoken.
The following report is a compelling summary of the testimony presented during the afternoon, and recommendations based on that testimony. We have also included as attachments to the report, a copy of the complete transcript, as well as other testimony we received by mail, fax and email.
We look forward to working with the administration in its pursuit to address the issues discussed at the forum and in the Ohio Access For People with Disabilities.
In closing, the people of Ohio who support the vision of Olmstead respectfully request that the Governor incorporate the messages of this report in his Update to the Ohio Access For People with Disabilities.
Sincerely,
Carolyn S. Knight, Executive Director - Ohio Legal Rights Service
Meg Kane, Co-Chair - Ohio Olmstead Task Force
Mary Butler, Co-Chair - Ohio Olmstead Task Force
On November 24, 2003, Ohio Legal Rights Service sponsored and the Ohio Olmstead Task Force hosted a public forum to discuss what changes are needed in the service system to make the U.S. Supreme Court's landmark decision in Olmstead vs. L.C. a reality in Ohio. Seventy-three people attended the public forum, which was entitled "Let Olmstead Ring!" The people spoke, and the following report captures the essence of what they said.
The people of Ohio who support the vision of Olmstead respectfully request that the Governor incorporate the messages of this report in his Update to the Ohio Access Report.
The seventy-three contributors to the forum included individuals with disabilities and elders, their spouses, their parents, their siblings, their children, their other family members, their friends, their advocates, and the public servants and government agency representatives who serve them.
Each person in attendance at the forum contributed to help bring into keen focus the continuing importance of the Olmstead vision. People contributed either by presenting testimony, or by listening, or by applauding, or by just being there, in support and solidarity.
Greg Moody, Governor Taft's Executive Assistant for Health and Human Services, spoke on behalf of the Taft Administration. He invited input and made two specific requests: (1) that Olmstead supporters recommend how the Administration can express who they are; (2) that Olmstead supporters recommend what needs to be done to make Olmstead meaningful.
This report answers Mr. Moody's requests, but goes one step further. The public forum and this report are living testimony to the diversity of Olmstead supporters, and the unified voice with which they speak of their commitment to Olmstead. In a strong and unequivocal voice they said, and will continue to say, that the vision of Olmstead must become a reality in Ohio — no matter what it takes. That is why we gathered, that is why we speak.
The state of Ohio will benefit greatly from listening to and acting upon what those who support Olmstead are saying. Their words reflect the best qualities of citizenship: an understanding of the law, a desire to exercise rights, acceptance of personal responsibility, and contribution to society and government. And their words express the greatest goals of humanity: freedom, independence, individuality, acceptance, commitment to family and community, and the pursuit of dreams. Their words ring clearly the message of a successful life — it is time to listen — it is time for Olmstead now.
We are people who want the freedom to choose where, and with whom we live, in a place we can call our home, a place that is accessible to us, and that we can afford.
"The most important thing is that everyone has choices. People with and without disabilities, that they have choices on where they live, and that community is a part of it." (L.W.)
"When he came back [from the nursing home], he had his life back … his backyard … the living room, all his gadgets … mom's cooking - never under estimate it. And all the love in the world from people who cared about him." (J.K)
"Most older people with long-term care needs want to stay in the community yet Ohio continues to invest in the most expensive form of care in nursing homes." (J.T.)
"Not every person with a disability wants to live in their own house. Not everybody with a disability wants to live in their own apartment. Some people want to share apartments, some people want to live with their family members, their husbands, their friends. But the most important thing is that everyone has choices." (L.W.)
"…60 individuals who have disabilities who used to live in congregate settings … now eat pie when they want … all in their own homes and because of Choices." (D.L.)
"[P]eople's lives should be defined in ways that make sense to them and services and supports should be available and designed in a way to help them achieve their hopes and dreams." (B. J.)
"People should have a choice on where they live. You do. Isn't it only fair?" (J.K.)
"I freaked, I was so happy that it [Olmstead} existed. Because the nursing home where [my husband] is … [is not] the setting … he would choose for himself." (B.S.)
"[Mom] had been in and out of nursing homes, and always intended to be a temporary thing until we could get her back and get her back on a waiver. But the third time just when we thought we had a waiver slot, she had another stroke, and she passed away. But to the very day before my mother died, she kept saying I want to go home. I want to go home. She spent her whole life asking the question why would anybody want to live anywhere except their home?" (J.C.)
"[The woman I am telling you about is 82. She is blind. She is deaf. She's MR/DD, And she has a mental health diagnosis. She's lived … for 22 years in a safe environment [a certified foster home under the Department of Aging]. She would technically be eligible to live in a nursing home, but she can live in the community because she has the support of … [the Residential State Supplement] program." (S.A.F.)
"I've been fighting to get her back home … to get my daughter out of the nursing home. And now I'm fighting for her rights, fighting for her right to be in her own home." (A.W.)
"We mandate that they spend down to $1,500 … and they're expected … to pay for the furnace, to pay for the roof. It just isn't fair. We need to look at that asset level. We are doing them an injustice by not allowing them to take care of their own home and do it in the right way. So I advocate that we look at this." (B.L.)
"If we really want people to stay in the home, Ohio must increase the asset level for passport. We all know that a savings of $1,500 does not allow for much repair to the home such as a furnace replacement or a roof replacement." (J.T.)
The Ohio Access Report recommended that Ohio implement self-determination strategies and redesign programs, consistent with consumer choice and high quality.
Virginia - Increase the personal maintenance allowance (PMA) to 300 percent of the monthly Supplemental Security Income (SSI) payment limit in all Waivers, which is the maximum allowable under federal law.
We are people who want and benefit from family and community in our lives. The role of family and community in a person's life is fundamental to the vision of Olmstead. This was one of the recurring themes at the public forum, potently and eloquently expressed throughout.
"So to answer your question, Mr. Moody, my family played a very, very significant role the majority of my life in providing the supports that I needed to live in the community and live with my family." (S.P.)
"For older people needing long-term care assistance, 80% of that care is provided by family and friends." (J.T.)
"I think one of the things that the access report misses consistently in both the old book and revised one is the value of the natural peer support systems throughout. The independent living centers, community centers for the deaf, mental health peer support groups are a valuable and integral part of care that frequently gets ignored because we're so driven by medicaid and not by people's needs." (D.D.)
"Never underestimate [the power] of mom's cooking." (J.K.)
"I was lucky to have family that helped me stay where I was until the funding came back. But it put a strain on my family which I regret and for which I feel guilty." (L.L.)
"I have been paralyzed on my right side and partially on my left side since 1947 from polio. My fear is that one day being forced into a nursing home. As I grow older and need more assistance this will become my reality! In 1961 I was fortunate to meet and marry a wonderful man who accepted my disability. Now that we are senior citizens and not in good health, if my husband dies I would have to get a personal assistant or go to a nursing home." (K.L.M.)
"I took really good care of [my husband when he lived at home]. This is not a patient, not an invalid, not a shut in, this is my husband." (B.S.)
"For 11 years, I lived in a nursing facility … I didn't have the life of my own or the life of freedom. Today I have a life and freedom. I'm very well known and respected in my community and I can't imagine not living in the community…. It is a right for everyone to live and be a part of the community." (T.G.)
"This is a message of success for community-based services for persons with disabilities. In April, [our 26 year old daughter] … received an IO waiver and moved to a home with 2 other women. Her adjustment was both swift and positive. [She] loves her new home, has employment in the community, and is busy with activities from the community and MRDD. The services … [she] now receives enable her to be a happy and contributing member of the community." (S.M.)
"While change for anyone can be difficult, the closing of the two developmental centers creates a wonderful opportunity for individuals with MRDD to enjoy a supported living environment in the community. This is in the spirit of the Olmstead decision handed down by the U.S. Supreme Court in 1999." (D.K.)
"What does a person need who is re-integrated into the community in their own apartment? Social interaction. I am of the opinion that this is a big necessity for recovery. Interaction is integration." (K.M.)
The Ohio Access Report noted that [T]he vast majority of long-term care…is provided informally by relatives, neighbors, and friends….The state has an important role in supporting, not replacing, this informal network.
Virginia - Facilitate the development and implementation of methods to promote recovery-oriented services for adults with mental illness, including effective consumer-operated and peer services.
We are people who want information and assistance on how to effectively access services.
"I had an extremely difficult time figuring out and navigating Ohio's system of support services for my child…. I'm still not sure that I fully understand and utilize the services available …. [T]he process is just too frustrating. At the same time, appropriate services and supports are essential in preserving the stability of … families." (J.M.)
"I rarely learned about services and supports from agency and/or department employees whose job it was to assist families. The majority of the information that I've learned as it relates to family support services has come from family members themselves. It was [a] parent who told me what the process would be to apply for a waiver…. Families are desperately searching for information to help their children." (J.M.)
"[T]he case managers … are not in the real world where we are. They have their offices and their papers and they don't know what it's really like." (B.S.)
"I got thrust into the system through the injury of my [adult] son …. [I] am a registered nurse, so I thought, well, I know the system. I can get things in place. But when it hit me, I needed every bit as much help as anyone else. It was unbelievable. Some of the bridges that we had to cross. And it was such an eye opener for me. Believe me, it really was." (C.L.)
"So often people just need information, guidance, and referrals into many other vehicles of care …. [B]y having a clear and identified entry point, families get the level of assistance they need before more expensive care may be the only option …. We know from … experience that a well-developed entry point saves money in the long run." (J.T.)
"Individuals and families need factual, objective information about service providers." (M.S.)
"[O]ne of our themes, our persistent efforts has been around getting what we call a comprehensive resource or service coordination system so that our folks get help finding opportunities where they exist." (S.M.)
"A key component of access is the availability of an assessor who is a skilled and knowledgeable and a case manager or care coordinator." (J.T.)
The Ohio Access Report recommended that Ohio provide better information and assistance for consumers and their caregivers.
Florida - Establish a statewide 211 Network, which consumers can call to access information and referral services.
Virginia - Create a statewide library/listing of disability-related resources, a statewide toll-free number that individuals with disabilities, families and advocates can contact to be linked with appropriate resources, including technical assistance, and a website on which available materials can be listed. Establish a web-based (how to) course for families, newly disabled individuals and providers on issues related to disability, with links to other information/resources. Require licensing agencies to post on their websites comprehensive information about providers and services available, including results of inspections and complaint history, as part of an effort to better inform individuals receiving services, their families, and the public.
We are people who want to work, and who want to be contributing members of our communities.
"We have skills[:] … let us support oursel[ves]." (L.G.)
"People with disabilities consistently report that they want to work, and those people who do go to work report how important it is to their sense of personal and economic well-being." (B.J.)
"Loss of healthcare is a huge barrier to work for people who must take medication on a daily basis." (J.C.)
"[I]mplement the Medicaid buy-in so that people do not have to choose between healthcare and a decent living wage." (M.S.)
"I might lose my disability if I work too many hours in a week or earn too many dollars." (L.G.)
"[T]he 70% unemployment rate among people with disabilities has remained virtually unchanged, even during times of economic boom…. The implementation of [Medicaid buy-in] program would send a clear message to people with disabilities that Ohio truly wants to remove one of the most significant barriers to employment, that being access to healthcare." (B.J.)
"How long … can we afford, as a state, to continue to relegate people with disabilities to not paying taxes, to not contributing to the economy of the state, to not buying goods and services that stimulate our economy and help us move from economic malaise to productivity? … 35 states already have a medicaid buy-in plan. 14 states already have the Department of Labor's Navigator System in place this fall. The Taft administration … [should be] on board with medicaid buy-in program…. [A] very nonspecific expansion of medicaid to support people with disabilities in the workforce … reminds me of Dick Nixon's secret plan to get out of Vietnam." (D.D.)
"Data is beginning to emerge that indicates the effectiveness of medicaid buy-in. Massachusetts and Minnesota, both states had implemented medicaid buy-in early on, have clear data that indicates individuals with disabilities in the aggregate use less healthcare when they are working." (B.J.)
"If people have a job and they've got some cash in their pocket … the opportunities expand dramatically. People have a chance to have a social life beyond the four walls of the public housing they live in or the institutional setting." (D.D.)
"[My son needs] to find a job and buy in for his own medicaid insurance. Otherwise, … it forces him into a spiral of poverty…. In order to get a job, support Medicaid Buy-In." (C.L.)
The Ohio Access Report recommended that Ohio Overcome policy constraints on self-sufficiency.
Virginia - Modify the state income tax code (a) to allow personal care expenses related to going to work or being at work to be deductible as a medical expense, and (b) to institute meaningful tax credits for employers and consumers who have out-of-pocket expenses for Personal Assistance Services in order to gain or maintain employment.
We are people who want affordable health care for ourselves and for our families.
"We have to assure that … to accommodate all of our citizens … there's affordable accessible healthcare." (D.D)
"People with mental illness often become ill in their late twenties early thirties after they have started working toward life goals such as college, careers, jobs, or families. People loose a lot when they become ill and/or disabled. Nursing homes suddenly become needed options to help people stay in their community because nothing else is available." (L.L)
"I took really good care of [my husband when he lived at home]. Anyway, he got hospitalized, he almost died because he's at the end of the hallway. He vomited, and the people who were working with him didn't know how to position him, he inhaled his vomit. He was given his last rites. I don't know how much that cost the state. That whole thing would have been avoidable, because at home, [we had] preventative knowledge." (B.S.)
"If I had been able to afford proper care for [my mother] … in her own home, she would not have suffered the pain and agony she endured as a result of being dropped on the floor several times in the nursing home." (M.S.)
"If a person is lucky enough to get out and find a decent place to live, they then have to be able find and direct adequate home health care. Which is almost impossible in rural areas." (G.K.)
"With braces that allowed me to walk, and then with a power chair I was able to work all of my life, raise two children and stay married to the same man for 42 years. I still work part time for my city as their ADA Coordinator. The only way I can afford my prescriptions is that … [by city] Council and my Mayor gave me that coverage instead of a raise. I realize how very fortunate I am, but so many of my friends are not. They go without their prescriptions for food. They go without getting their wheelchairs fixed because they don't have the money." (K.M.)
"It is unaffordable for my family to pay for the medical expenses that are necessary for the intervention … [my child with a disability] receives. The waiver pays for weekly physical therapy, which is not covered by our private insurance after 20 calendar visits…" (J.M.)
The Ohio Access Report recommended that Ohio approach the development of home and community based care choices in support of health, wellness, and prevention of unnecessary, premature institutionalization.
Virginia - Enhance the integration of primary health and mental health benefits and treatments for persons with mental illness and dual diagnosis.
We are people who want to choose who assists us to care for ourselves.
"One of the greatest things that the state did [was allow my son to] choose and select and have his own independent providers. The home care agencies were getting the bulk of the money. Now the bulk of the money goes to the provider. And John is able to select, hire and fire his own attendants. And it gives him such a better quality of life, so much more dignity to his life. He is in control…" (C.L.)
"Today, my sister and I are homeowners and live together independently in the community with our service dogs due to the availability of personal care assistance." (M.B.)
"Through monetary assistance from the rehabilitation services commission, I employ three people who help me seven days a week. These employees, my personal care attendants, help me get ready for work in the morning, clean the house on the weekends, help me buy groceries, and do the laundry, and drive me in my van to different places to run errands. The total cost to the state of Ohio through our rehabilitation services is $14,000 a year. As an employer I match and pay back to the state and federal government employee withholding taxes of $3,000. As an employee, through my own work, in my own personal taxes, I contribute $9,000 back to the federal government and the state and local governments. Approximate cost to the state of Ohio for helping me live in the community then, after all taxes are paid and everything is said and done, is $2,000 a year. Without this assistance, I would not be able to keep my home or my job. My only real option would be to reside in a nursing care facility. And I ask you at what cost to the state?" (S.P.)
"My wife and I are aging caregivers for our [adult] son. We both are over 60 years old [and have] hopes that our son will be allocated an IO waiver soon and be allowed to transition into supported living so we will have a choice of where and with whom he will live out his life. But we live in constant fear of something happening to us and our son becoming an emergency case to the … county board. That would mean he would have to be placed in the first available housing with no thought of choice, where or with whom he would live…. This is not an easy thought to have to live with." (C.B.)
"For older people needing long-term care assistance, 80% of that care is provided by family and friends." (J.T.)
"I have been paralyzed on my right side and partially on my left side since 1947 from polio. My fear is that one day being forced into a nursing home. As I grow older and need more assistance this will become my reality! In 1961 I was fortunate to meet and marry a wonderful man who accepted my disability. Now that we are senior citizens and not in good health, if my husband dies I would have to get a personal assistant or go to a nursing home." (K.M.)
"Care at home is better….and can cost less….This is not a patient, not an invalid, not a shut in, this is my husband." (B.S.)
"Existing dollars could be used more effectively by allowing consumers to direct their abilities to purchase the services that they want and need." (J.C.)
"Most of the care will continue to be provided by service providers who provide personal care. The workers are not paid a decent wage." (J.T.)
"If my personal assistant doesn't show up, my life stops, and without these personal assistants I would be forced to live in an institution." (L.G.)
The Ohio Access Report recommended that in Ohio money follows the person.
Colorado - Allow senior citizens to receive a direct payment through vouchers to purchase qualified services, using state and federal money to implement the consumer-directed care program.
Florida - Allow people enrolled in Medicaid home and community-based waiver program to hire a service provider of their choice.
Maine - Implement state-funded and Medicaid-funded consumer-directed personal care assistance services for adults with disabilities.
Virginia - Amend relevant statutes and regulations to permit attendants to provide activities if the activities may be performed by the individual if the individual were physically capable, and the procedure could be safely performed (e.g. at home) [see Kansas statute]. Establish one definition of a "qualified provider" for whom payment for services, supports or goods can be authorized. Increase the pool of providers by re-titling Direct Care Workers/paraprofessionals/others to "Direct Support Professionals" (DSP) and ensure that regulations/training materials use that title. Provide DSPs with information on and assistance applying for state and federal programs and benefits for which they may be eligible and explore options for providing consumer-directed attendants, companions and respite staff health insurance and other benefits.
We are people who want the freedom to choose where, and with whom we live, in a place we can call our home, a place that is accessible to us, and that we can afford.
"Moving … into the community is not an easy task. The average length of stay for those individuals in the nursing home is approximately three years. And before many of them are ready for permanent independence, they often need a reintroduction into the community to build trust, basically [a transition period…Think back when you moved into your first apartment after high school or college." (D.L)
"A lot of times when high school students leave the education [system] … they end up in nursing homes and other institutions. Ohio needs to say transition must start at age 14 or must start at age 16, because if we don't plan for these students when they get out of high school, then we've already lost the battle before we've even started." (L.W.)
"The first thing that needs to happen is for Discharge Planners in the nursing homes be trained on all of the "Community Based Services"." (G.K.)
The Ohio Access Report recommended that Ohio enable successful transitions to community-based living.
Maryland - Conduct outreach to individuals currently living in nursing facilities or other institutions. Pass legislation which requires social workers, by law, to provide nursing home residents a one-page information sheet that explains the availability of services under home and community-based waiver programs. Also requires that, when a resident indicates an interest in receiving services in the community, the case manager at the local department of social services must refer the resident within 10 days to those who can provide information and benefit applications. Also, work to educate hospitals about community-based long-term care options.
Mississippi - Pass legislation requiring that consumers and their families be part of the assessment and planning process when appropriate.
Utah - Launch a statewide campaign using "education teams" to inform nursing home residents about community-based long-term care options. Education teams can consist of representatives from Area Agencies on Aging, local health department, and Independent Living Centers. Education sessions are voluntary, and residents who express interest can then received an intensive needs assessment.
Virginia - Identify youth with severe emotional disturbances who do not have IEPs and implementing transition services for them (e.g. youth in residential treatment facilities, group homes and detention facilities). Amend the state medicaid plan to include transition training as part of personal care services, and establish a fund for people in institutions to use for utility and rent deposits and other up front household expense to enable them to move from institutions.
We are people who want the freedom to choose where, and with whom we live, in a place we can call our home, a place that is accessible to us, and that we can afford.
"Ohio must embrace and utilize "the money follows the person" so that people with disabilities can more readily leave institutions and receive necessary services in their home. At the same time, Ohio needs to address the severe housing crisis with respect to the lack of accessible, affordable housing. These two factors play a major role in why Olmstead is not a reality in Ohio." (M.B.)
"It is in everyone's best interest to help communities develop housing to fit [the] … needs … [of a person with a disability] … [Housing] is part of recovery, which decreases the cost of taking care of people who stay sick or who are using more services then they want or need because nothing else is available." (L.L.)
"If people have safe, affordable housing, [if] they have transportation, if movie theaters, if places of recreation that the rest of us go to are accessible, that will expand those opportunities." (D.D.)
"[R]ecent studies of those who are in prisons and jails show that these are our new state hospitals. That's where so many of our people are. Or they are in homeless shelters, on the street, or they're the folks under the bridges that many of us have passed at night or coming out here today." (J.C.)
"I could not find any decent place with affordable rent that would take vouchers and children. People double-up and triple-up or live in barns so that it often appears to many people that we don't have any homeless in their area. My son has a friend, who at age 18, lived in a barn. Now that the winter is here, he has found a one-bedroom apartment with three other people." (L.L.)
The Ohio Access Report recommended that Ohio call for the development of a coherent housing strategy that supports seniors and people with disabilities who desire to remain in the community.
Indiana - Provide administrative resources to facilitate and administer state/local application for all available federal/state funds to support housing initiatives (i.e. Mainstream Vouchers-Section 8 vouchers for individuals with disabilities). Generate funding for such a project from Real Systems Change mini-grant or other state-identified sources.
Virginia - Develop a legislative proposal to require landlords to treat as income the value of Housing Choice vouchers and other public benefits for individuals with disabilities. Also, promote "visit-ability" design of homes and provide training in Universal Design to anyone involved in home building.
Missouri, Maryland - Allow housing modification and other housing costs to be covered with a transition stipend authorized by the state legislature. Explore tax credits or other incentives to builders to encourage the development of more affordable, accessible housing.
Maryland - Gain support from developers to build more affordable, accessible housing. Modify the weight factor in the state's Qualified Allocation Plan as an incentive for developers to set aside a percentage of housing units for people with disabilities. Develop a pilot project to bring local housing authorities together with other service agencies to strategize on increasing housing and the use of Section 8 vouchers for persons with disabilities. Design a statewide interactive accessible housing database to be used by all agencies working with people with disabilities. Draft a Human Services Resource Guide for the local housing authorities that is a "one-stop-shop" listing of various agencies providing services to individuals with disabilities.
Kentucky - Require new housing construction to use universal design features and increasing linkages between housing developers and those needing housing.
Hawaii - Identify existing funds for workforce training and education, developing a unified community-living workforce development plan, and establishing a public-private partnership to provide professional liability insurance for community living personnel.
We are people who want access to our government and who want to be able to move about freely in public places in our communities.
"[I]n order for anyone with a disability to maintain … [themselves] independently in the community -- [there must be] transportation, adequate, affordable, accessible transportation that allows persons to get around the community and conduct business and go to work." (K.L.)
"We have to assure that … [is] affordable, usable public transportation to accommodate all of our citizens." (D.D)
"Transportation in Central Ohio, we need to address, folks. They don't quite understand what it is that the disabled community needs to have in order to get out there and work." (L.G.)
"[Personal] assistants help me with driving my adapted van." (L.G.)
The Ohio Access Report should recognize the need for transportation services for self-determination and independence.
Virginia - Amend the state transportation budget to balance expenditures between highways and between public transportation. Develop a contractual requirement that Medicaid-sponsored transportation providers be ADA and Section 504 compliant. Require public transit routes and stops to be located near, and accessible to, housing social service agencies and programs. In the future, require all State agencies providing services to be located on public transit routes.
We are people who want access to our government and who want to be able to move about freely in public places in our communities.
"I think that the first thing the access report should do is make sure that all the state offices, including the capitol, have clear signage on how someone with a disability accesses those public buildings. And that would be a recommendation." (L.W.)
"Access to Ohio's parks and facilities. Access to Ohio government facilities. Access to Ohio's libraries. Access to Ohio's loan programs for housing for people with disabilities. Access to Ohio's arts programs and facilities. Access to travel programs and facilities. Access to the election process by making all of the Ohio election sites accessible. This is not the inclusive list but just a sample and starting point where we need to begin to look at access for people with disabilities access to Ohio." (R.L.)
"An increase in accommodations for persons with disabilities at conferences and public meetings." (M.R.)
"We can educate our legislators … become their source of disability information." (M.B)
The Ohio Access Report recommended that Ohio increase the participation of consumers and family members in assessing … services.
Virginia - Include more people with disabilities in all planning processes, and appoint more people with disabilities to boards and planning groups. Establish regional and Statewide town meetings using teleconferencing and video conferencing to assist people with disabilities to participate in planning for independence, and use online chat rooms for focus groups. Encourage meeting planners to address meeting accessibility issues.
We are people who want Ohio to be the nation's leader in implementing the vision of Olmstead. The vision of Olmstead is clear and profound. This is the time to back that vision with action, with timelines, with resources, with commitment to make Olmstead a reality now.
"[T]he administration has embraced the Ohio Olmstead decision and is actually listening to us. And I mean listening. It's also exciting because some of the legislators are now changing their opposition -- or opinion, I should say, to long-term care. And they see a need for … a change in the systems." (M.B.)
"Most of the barriers are not physical but attitudinal, both ours and theirs." (K.M.)
"Why can't we therefore be the first state in the union to follow through … let Ohio be among the first states, and let [the President's New Freedom Commission on Mental Health] not gather dust in this state, as it seems to in so many others." (J.C.)
"Ohio must reform its approach to long term care." (J.T.)
"Look beyond medicaid and healthcare issues for Ohioans with disabilities to have the prospect of living useful lives in this state." (K.L.)
"The Olmstead decision is the difference between confinement and freedom. [F]or some individuals … [who] believe the nursing home was and is their only option, … learning [about] … Olmstead … is the bittersweet moment of tears and laughter." (D.L.)
"I want to know why … it is an 'entitlement' for people like myself to live in the community. If the regular Joe Schmoe has a right to live in the community, then why don't I have that same right he has?" (T.G.)
"Depriving any human of the option to live their life as they dream it is fundamentally wrong. You cannot deprive a person of being human." (J.K.)
The Ohio Access Report recommended that Ohio realign its public resources in response to consumer demand.
"[We are] not here today … to engage in a bake-off over one disability against the other…. [W]e … are one in what we are trying to do." (J.C.)
"We want to work arm in arm with the different agencies and disability groups that are here." (S.M.)
"Money follows the person is just half of the equation. If you have empty shelves and nothing to purchase or have, it is useless." (M.K.)
"We all know, and it is not been mentioned, … [that] our legislators do get funding from the special interest groups. And the nursing home industry. I don't look at disability as a special interest group. We are one car accident away, one breath away, … a few years away from losing skills." (M.K.)
"[B]ecause we came along in greater numbers a little later, no system was established to care for our folks … we need folks to know that for people with brain injuries, … we don't have access to th[e] system." (S.M.)
"I was so happy that someone stood up for a disabled person and didn't let someone else walk all over them." (L.G.)
"[The life of my child with a disability was] defined by a label, by a label of a disability, and the program he was supposed to fit into. My daughter [who did not have disability] had no label, and a life defined by her own gifts and talents. And she fit life into what she wanted it to be and how it was defined by her. One was controlled by the system; and one was directed by the person." (M.K.)
"We've got to realize the aging process does affect everybody. But when someone with a disability, it has an earlier onset…. [W]e are finding more and more that individuals with disabilities who have worked and are totally independent, but due to aging process, [are] now dependent on services. And I think that is something we need to address." (R.S.)
"But I understand now why there needed to be a disability act…. And I'm looking for my daughter to be set free." (A.W.)
"I would much rather be in control of who I hire because I do a better job of screening applicants and finding reliable people than home health agencies. However, … all the things involved in managing personal assistants are skills … I was taught and have practiced over many years. Without these learned skills my personal assistance system would have fallen apart …. So there needs to be a teaching component, taught by people who use personal assistance, included in the implementation of the Olmstead decision because if consumers come out of institutions under the present system, without sufficient training of how to direct their own care and assistance services; hire and fire assistants; schedule, etc … their independence may fail." (L.G.)
This report to the Governor was produced by the Ohio Legal Rights Service, with support from the Ohio Olmstead Task Force.
Ohio Legal Rights Service (OLRS) is funded in part by, and prepared this publication with, grants under the following federal laws: Developmental Disabilities Assistance (DD) Act, administered by the Administration for Children and Families; Protection and Advocacy for Mentally Ill Individuals Act (PAIMI), administered by the Center for Mental Health Services of the U.S. Department of Human Services; Rehabilitation Act of 1973 as amended, administered by the Office of Education Services and the Rehabilitation Services Administration of the U.S. Department of Education; and Ticket to Work and Work Incentives Improvement Act, administered by the Social Security Administration.
OLRS envisions a society in which people with disabilities enjoy the same rights and opportunities as all people to make decisions about where, how and with whom they will live and work as full and equal members of their communities.
OLRS is an independent state agency whose mission is to protect and advocate, in partnership with people with disabilities, their human, civil and legal rights. OLRS accomplishes this mission by providing information, referral and educational services, individual case advocacy, policy analysis and legal representation with the ultimate goal of achieving meaningful systems change for people with disabilities.
Ohio Legal Rights Service does not discriminate in provision of service or employment because of race, color, religion, sex, sexual orientation, national origin, military service, disability, or age.
Ohio Legal Rights Service
50 West Broad Street, Suite 1400
Columbus, Ohio 43215-5923
TEL 614-466-7264 / 800-282-9181
TTY 614-728-2553 / 800-858-3542
FAX 614-644-1888
http://olrs.ohio.gov