DAA Responds to TASH's Dangerous Rhetoric
Disability Advocacy Alliance (DAA), an organization of parents, guardians and family members of Ohioans with intellectual and developmental disabilities, feels compelled to correct the ignorant and dangerous rhetoric put forth in the April 25th letter from Elizabeth Trader of TASH published in the Columbus Dispatch.
Ohio’s Developmental Disabilities service system offers a full range of residential options from Intermediate Care Facility (ICF) homes of various sizes to disability specific farms to group homes. We’re also fortunate to have an array of employment options, including sheltered workshops, facility-based day programs and competitive employment. Ohioans with developmental disabilities make real choices about where to live, work and enjoy their community. The nearly 50,000 people served can safely address their individual, and oftentimes, acute needs. What’s more, state legislators injected an additional $300 million into the system in July 2015.
Ohio’s DD system fulfills the mission of the Americans with Disabilities Act (ADA) and the Supreme Court’s Olmstead decision. This law empowers individuals with disabilities to make their own decisions about how to lead their lives and calls for services to reflect the diversity of the disabled population. This law clearly recognizes that life decisions should not be dictated by strangers without intimate knowledge of the needs and wants of the vulnerable individuals affected.
Disability Rights Ohio’s (DRO) lawsuit will destroy the continuum of care in Ohio and remove the right of self-determination from individuals with developmental disabilities. Families are not fooled by DRO’s softer rhetoric this time around. This isn’t our first rodeo. Individuals with intellectual and developmental disabilities and their families have been fighting DRO and its reckless agenda for decades.
Finally, we’re not swayed by TASH and DRO’s discriminatory and stigmatizing suggestion that specialized programs for people with disabilities are “segregated.” Furthermore, we reject their notion that the value of a disabled individual’s life is dictated by the degree to which that person can handle “community” settings. Parents and family members have learned too many life lessons from their disabled loved ones to be prejudiced by such ignorant thinking.
Gov. Kasich Tells Protestors Promoting Community Settings Regardless of Need and Choice,
"I am going to do everything I can to help you"
Activists with disabilities promoting community integration held a protest at a Kasich presidential campaign rally in New York state. The protestors wanted to learn Governor Kasich's stance on the Disability Integration Act, a radical piece of federal legislation that would require states to transition people into community settings regardless of individual need and choice.
Governor Kasich assured the protestors, "I am going to do everything I can to help you."
This incident shows the importance of Governor Kasich providing individuals with intellectual and developmental disabilities harmed by DRO's lawsuit separate and independent legal representation so that their vital interests are protected in this litigation.
The Kasich administration claims it will vigorously fight DRO's suit and protect the interests of our loved ones, but as this incident shows, Ohioans with intellectual and developmental disabilities are competing with the interests of individuals throughout the country as our Governor seeks votes for his presidential campaign.
Please send a letter to Governor Kasich and Attorney General Mike DeWine requesting separate and independent legal representation for individuals who rely on and/or want to retain ICFs, sheltered workshops and facility-based day programs.
Go to our Take Action page now to send an electronic letter to Governor Kasich.
DAA Press Release Re: Disability Rights Ohio Lawsuit
April 13, 2016
Disability Advocacy Alliance (DAA), disabled individuals and their families are sending letters to Governor Kasich and Attorney General Mike DeWine requesting separate and independent legal representation to defend Ohioans with intellectual and developmental disabilities (I/DD) against a DRO lawsuit harmful to their health, safety and welfare.
Through decades of threats and litigation, DRO, Ohio’s Protection and Advocacy (P&A) system for individuals with disabilities, has put fragile Ohioans at risk of losing life sustaining services, leaving parents, guardians and family members in a constant state of worry, concerned about their disabled loved one’s future.
DRO’s lawsuit attacks Ohio’s Intermediate Care Facility (ICF) program, sheltered workshops and facility-based day programs which over 37,000 thousand Ohioans with intellectual and developmental disabilities rely on for higher levels of care such as 24-hour nursing, monitoring and/or behavioral supports. The suit seeks to substantially redirect state resources away from these programs to “community settings”. Read moreHERE.
Act Now: Join DAA in requesting separate and independent legal representation for fragile Ohioans harmed by DRO's lawsuit.
Disability Rights Ohio (DRO) has filed suit against the State of Ohio attacking its Intermediate Care Facility program, sheltered workshops and facility-based day programs which serve individuals with intellectual and developmental disabilities. The suit seeks a judicial order that would substantially redirect state resources away from these vital programs to "community settings."
Disability Advocacy Alliance (DAA) recognizes the need for the full array of services to support the diverse needs of individuals with disabilities. We believe, however, the choice of where to live and work resides with the individual, acting independently or with the aid of responsible family members or other guardians. These choices should not be made through an unwelcome and unrepresentative lawsuit.
As Ohio's protection and advocacy agency, DRO is charged to represent all individuals with disabilities, regardless of the severity or degree of disability. Individuals who rely on higher levels of care, however, find themselves marginalized by DRO's lawsuit and left devoid of legal representation in a case that directly affects their health and welfare. Clearly, DRO suffers a disqualifying conflict of interest within the class it seeks to represent.
DAA has sent a letter to Governor Kasich and Attorney General Mike DeWine requesting separate and independent legal representation for individuals with intellectual and developmental disabilities whose interests and well-being are jeopardized in this litigation. Please read DAA's letter HERE. We believe such representation is the only way to ensure that the interests and acute needs of these individuals can be properly brought before the court.
We urge other concerned Ohioans to join us in our request to Governor Kasich. Please click the appropriate link below to send a ready-to-send electronic letter to Governor Kasich, Mike DeWine and other state officials.
Letter for Parents and Guardians. Please clickHERE.
Letter for Family members, Friends and Caregivers. Please clickHERE.
It has come to our attention that DRO will file a lawsuit on March 31st against Ohio's ICF program alleging that many ICF residents would prefer to live in small waiver homes and work in competitive employment. DRO's suit is a class action, therefore, DRO will claim to represent all individuals residing in ICFs regardless of the unique choices, needs and capabilities of Ohio's 5,800 ICF residents.
DRO has issued a "Fact" Sheet describing their lawsuit. Please find it HERE.
DAA will work to ensure that state and federal officials and the public understand that DRO does not speak for the 5,800 individuals who reside in ICFs around the state. ICF residents speak as individuals with the aid of their parents, guardians and family members.
If you wish to join with DAA to fight DRO's attempt at dismantling Ohio's ICF program, please contact us by sending an email to our website at info@DisabilityAdvocacyAlliance.org.
Governor Kasich has signed the biennium budget, but not without vetoing language that ensured sheltered workshops would remain open to serve individuals who rely on them for safe and appropriate employment opportunities. The fight does not end, however, with this veto. Advocates provided strong and reasoned arguments to lawmakers to maintain sheltered workshops and facility-based day programs. After much consideration, Republicans and Democrats in the House and Senate overwhelmingly support these programs.
The Department of Developmental Disabilities (DODD) plans to implement replacement employment programs over the next ten years. DODD Director John Martin said in a statement that this does not mean sheltered workshops are closing. It’s unclear exactly what it means, but his statement tells us that the Department has heard the advocacy of families and is aware of the power of our message.
With respect to Intermediate Care Facilities (ICFs), state legislators removed the most immediate threats to these facilities from the budget. But going forward, the DODD will push to move 1,200 ICF residents to waiver homes and small ICFs of 6-8 beds, all the while claiming ICF residents can remain in the setting of their choice. This is nonsensical. You cannot downsize or close someone’s home and still provide the same home. This is especially true for the 1,200 individuals who will be dislocated. Furthermore, it is impossible to provide the same level of expert care in small settings. Health and safety will be compromised.
Others will be harmed as well. The DODD’s policy to downsize large ICFs will raise the cost per bed across the program. This will be true even in the largest ICFs as there will be fewer residents sharing services. Taxpayers will feel the strain of higher costs and individuals on wait lists for services will wait even longer as the Department embarks upon an economically unsustainable residential model.
The DODD’s false platitude of preserving residential choice sounds nice in sound bites and press releases, but has dangerous implications in real life. But the fact that platitudes are necessary to fulfill the Department’s agenda is evidence of the weakness of its message. The Department knows large ICFs are preferred by the thousands of individuals who have chosen them for safe and compassionate care. The record number of hours of public testimony in the Ohio Assembly was evidence of this as was the proactive response from Republican and Democratic lawmakers. These leaders demanded that many detrimental policies harmful to private ICFs were removed from the budget. Legislators also proposed a commission (now vetoed) to review developmental center closures.
In his statement about the budget, Director Martin also talked about the increase in wages for personal care workers. DAA supports this increase, but the public should know that this increase pertains to workers in HCBS waiver settings. DODD removed from the budget the wage increase for private ICF workers for 2016 and lowered the wage increase for 2017 by placing restrictions on the funding connected to it.
Private ICFs provide care to the most vulnerable and medically fragile individuals in the State of Ohio, including individuals with quadriplegia, profound mental retardation, tracheotomies, ventilators and epileptic seizure disorders. The proper care of these patients is extremely strenuous. Personal care assistants in private ICFs are just as deserving of an appropriate wage as individuals working in HCBS waiver settings. And certainly, ICF patients are just as deserving of quality care and continuity of care, both of which are connected to fair wages. Concerned parents and family members are left with many questions as to why private ICF residents and personal care workers are being marginalized.
During budget negotiations, the DODD’s refusal to accept House amendments to the Developmental Disabilities Bill of Rights involving the role of families and guardians in the lives of individuals with intellectual and developmental disabilities was also perplexing. Individuals with serious disabilities require the aid of their families and guardians when making critical decisions. Denying this fact skirts the basic underpinning of guardianship law and ignores U.S. Supreme Court precedent. But most significantly, it ignores the importance of the family unit in our society. DAA was formed by families to protect the rights of individuals with disabilities. Through our advocacy, DAA will continue to demonstrate to the administration the irreplaceable value of family.
DAA wants to thank the 21,295 Ohioans who supported us in our advocacy by signing our petition in support of ICFs, sheltered workshops and facility-based day programs. We are especially grateful to the members of the Ohio House and Senate who listened compassionately to the concerns of families and stood strongly for disabled citizens who face significant challenges in life. Legislative support of individuals with disabilities demonstrates that compassionate governance prevails in the Ohio Assembly.
While parents, guardians and family members are disappointed in Governor Kasich’s vetoes and other initiatives which thwart choice for people with disabilities, we must remember that one man cannot trump the will of thousands in a democratic republic. The good-hearted people of Ohio - lawmakers and citizens alike - have spoken. They want individuals with disabilities to have real choice and safe and compassionate services.
DAA will continue to advocate for our loved ones to preserve residential and employment choice for individuals with disabilities in Ohio. We will reach out to all advocates with future plans. Please stay tuned. Please stay engaged. And please continue to speak out and educate others about these issues. The more the general public understands what we face, the more citizens we will have fighting with us.
Supporters of sheltered workshops and facility-based day services can make their voices heard in Washington D.C. by submitting testimony to the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities (ACICIEID).
ACICIEID is mandated by the Workforce Innovation and Opportunity Act of 2014. The Committee must issue recommendations to Congress to increase integrated employment opportunities for individuals with intellectual and developmental disabilities. ACICIEID began meeting in January 2015 and their interim report is due September 15, 2015.
There is concern that the Committee may recommend the elimination of the sub minimum wage and may change the nature of the Ability One program. Ability One is a federal program which contracts with sheltered workshops to make products for the federal government. Both of these recommendations would be devasting to individuals with disabilities who rely on sheltered workshops for productive work opportunities in safe and appropriate settings.
Please consider sending written testimony. Tell the Committee why your family member’s sheltered workshop is important to them. Self-advocates are encouraged to email testimony as well.
Email testimony by Thursday July 2nd to:
Do not include your testimony in the body of the email. Instead, attach the testimony to your email as a Word document or as a PDF. The Committee will also accept video testimony.
Your email and testimony should be addressed to:
US Department of Labor
200 Constitution Avenue, NW, Suite S-1303
Washington, DC 20210
Please note that all testimony is public information so do not include any information that you do not want to be made public.
The biennium budget has posed both houses of the Ohio Assembly and now resides with Governor Kasich. The Governor's office is currently reviewing the budget and will issue any line item vetoes. The budget is expected to be enacted by July 1st.
Disability Advocacy Alliance will provide a recap of the budget policies that effect Developmental Disabilities programs. Please stay tuned for this.
While we made much progress in keeping Intermediate Care Facilities, sheltered workshops and facility-based day services open, more work needs to be done to ensure the long-term viability of these programs. Thank you to all Ohioans who advocated and supported advocates during the Ohio Assembly's review of the budget.
The Senate has released its version of the budget and will vote this Wednesday or Thursday. The DD portion of the Senate's budget matches to a large extent the House's budget. However, the Senate did not retain amendments made by the House to the DD Bill of Rights. Any differences between the two bills will be worked out in Conference Committee.
The most immediate threats to Intermediate Care Facilities were removed from the budget by both the House and Senate. Benchmarks to downsize large ICFs and to reduce residents per bedroom remain, however. Going forward, it will be necessary for parents and guardians to continue to advocate for their loved ones who reside in ICFs.
The Senate and House version of the budget contains new language to keep sheltered workshops open at their current levels of participation.
The advocacy done by families and guardians and friends of the developmentally disabled throughout the state was key to securing changes to the budget that we hope will keep the ICF and sheltered workshop programs in place. We need to continue to watch the process closely as the budget goes into Conference Committee and then is signed by Governor Kasich. We hope all the progess that has been made to date remains.
DAA submitted the remaining petition signatures to the Ohio Senate on Thursday June 11th. 21,295 signatures have been lodged with the Ohio Assembly in total. Thank you to everyone who participated in our petition campaign. It was critical in getting the most immediate threats to ICFs, sheltered workshops and facility-based day programs removed from the budget.
Disability Rights Ohio (DRO), the group which wants to close ICFs, sheltered workshops and facility-based day programs also opposes the inclusion of language in the DD BIll of Rights which gives individuals with intellectual disabilities the right to have family members and guardians assist them in decision making. DRO says that including families and guardians in decision making,
"...represents a position that is in conflict with current academic and policy thinking related to people with disabilities, person-centered planning, and self-determination. People with disabilities are now given authority over and supported in making their own choices. "
Does the latest trend in academics and policy-making trump the bonds of parental love???
Please let the Ohio Senate know that parents, family members and guardians play an essential role in the lives of individuals with profound intellectual and developmental disabilities. The people that love them the most should not be cut out of a disabled person's life. Contact State Senators today. Go to our "Take Action" page to get a list of important State Senators to contact.
Ohio Revised Code contains benchmarks which require 1,200 Intermediate Care Facility beds to be converted to waivers or downsized to small ICF settings of only six beds. Small six bed settings may be appropriate for higher functioning individuals; they are inappropriate for people with complex needs. It is too costly to have full-time supervision and 24 hour nursing on site in facilities with only a handful of residents. Forcing ICFs to move residents to small six bed settings lowers system capacity for people with complex needs.
Six bed ICFs are also financially unsustainable as there are no economies of scale. Please see HERE for an explanation of why these settings are too costly to maintain. What will happen to ICF residents who are transferred to these settings? If the ICF provider is unable to maintain these settings due to unsustainable costs, what will happen to residents transferred to these settings?
Solution: (1) Remove benchmarks that force downsizing and conversions to waivers. ICF system change should be based on the needs of residents, not targets laid down in Ohio Revised Code. (2) Allow ICFs to build additional living space on their own campuses. In this way proper supervision of new settings can be maintained as well as ready access to specialized staff.
UPDATE: The Senate Medicaid Committee has indicated it may remove the amendments made by the House to the DD Bill of RIghts. This is due to testimony from high functioning self-guardians who oppose the inclusion of language that allows for individuals with profound needs to make decisions with the aid of their family or guardians.
DAA has proposed new language to the DD Bill of Rights which addresses the concerns of all parties. Please read about our proposed solution HERE. If you are in agreement, please contact the Senate Medicaid Committee and tell them to accept Disability Advocacy Alliance's proposed amendment to the DD Bill of Rights. Click on "Take Action" for a list of the Medicaid Committee members.
The Ohio House added amendments to HB 64, the House Budget Bill, to strengthen the Developmental Disabilities Bill of RIghts. Please view the DD Bill of Rights and amendments at the link HERE. All changes that were just added are underlined. If you support these changes, please call your State Senator and Members of the Senate Medicaid Committee and tell them that you support the DD Bill of Rights amendments. Their phone numbers can be found on our Take Action page. The amendments include:
VOR has written a letter in support of the changes to the DD Bill of Rights. It can be found HERE.
Disability Advocacy Alliance has written a letter in support of the changes. It can be found HERE.
The Ohio House of Representatives have passed its version of the budget. The budget now moves to the Ohio Senate where it will be reviewed by the Medicaid Committee and the Finance Committee.
Intermediate Care Facilities:
The House made many positive amendments to the budget which removed some of the punitive measures to ICFs. We urge the Senate to maintain the progress the House made on issues related to Developmental Disabilities. However, the following items were added to the budget which are opposed by DAA:
Sheltered Workshops and Facility-based Day Programs:
The House added language to the budget that requires the Department of Developmental Disabilities to support sheltered workshop services at their current levels of participation. We urge the Ohio Senate to maintain this language and to expand it to include facility-based day programs which provide services to individuals with complex needs who cannot perform sheltered work.
DAA will continue to fight in the Ohio Senate to maintain the progress that has been made in the House and to address the above referenced concerns. We hope that you will join us in this fight. Please TAKE ACTION by following the steps in the yellow ACTION box above. Do not hesitate to contact us if you should have any questions. Thank you for your efforts on behalf of individuals with developmental disabilities.
DAA lodged 18,585 signatures with the House Finance Subcommittee on Health and Human Services on March 17th objecting to Executive Budget Proposals which will force the elimination of ICF beds, closures of ICFs and the closing of facility-based day programs and sheltered workshops. The 18,585 signatures represents an incredible outpouring of support for our most vulnerable citizens.
UPDATE: DAA submitted another set of petitions to the Senate Finance Committee on June 11th bringing the grand total of signatures lodged with the Ohio Assembly to 21, 295 signatures. We are extremely grateful to all Ohioans who supported this effort by collecting signatures and signing the petition. These signatures were instrumental in receiving strong legislative support of these programs.
DODD does not know how licensed nursing will work on the IO Waiver, but it has not stopped DODD from trying to dismantle the ICF program. Please see HERE for more information. Tell your State Representative that it is irresponsible for the ICF program to be dismantled when licensed nursing services have not been established on the waiver, nor even tested.
The future of the ICF program, Facility-Based Day Services and Sheltered Workshops is in the hands
of the Ohio House of Representatives as it considers the Executive Budget.
The Governor's Office of Health Transformation (OHT) declared in its summary of DODD-related budget proposals,
It's clear, the Executive Budget is about eliminating choices for people with intellectual and developmental disabilities, rather than expanding choices.
Click HERE to print a petition to stand up for residential and day program choice and object to the Executive Budget proposals.
Want to do more?! We hope so. Go to our "Take Action" page to learn who to contact in the Ohio House of Representatives.
DRO does NOT speak for us:
In a letter to Governor Kasich of July 1st, DRO claimed there was segregation in Ohio's DODD system which DRO alleges relies too heavily on Intermediate Care Facility homes (ICFs) and facility-based day and work programs. DRO points to the U.S. Supreme Court's Olmstead decision to support its claim, but by doing so, DRO misrepresents the true meaning of Olmstead. Olmstead makes clear that a state must provide a range of services to meet the diverse needs of people with mental disabilities. The Court stated that "institutions" must remain available to those individuals who rely on them. Learn more about Olmstead HERE.
DODD has entered into confidential negotiations with DRO which will impact the future of the programs and services our loved ones depend upon for residential and day services. We are concerned by the lack of transparency in this process and we call on the DODD to look to parents, guardians, and program recipients to determine the future course of programs offered.
DODD Strategic Leadership Planning Group (SPLG) has released its FINAL REPORT which proposes:
Read DAA's response to the SPLG's final report HERE.
CMS has issued rule changes which define the settings in which Home & Community Based Services (HCBS) may be offered.
Read DAA's Testimony of Concerns to Ohio's CMS Transition Plan HERE. Find Ohio's CMS Transition Plan HERE.
DRO's, DODD's, and CMS' actions are being taken in the name of "community integration." DAA repudiates the notion that our loved ones live segregated lives.
Individuals with intellectual disabilities form meaningful relationships within the communities of their ICF homes, disability farms, and day service settings. And they enjoy relationships with family, friends, and volunteers in the larger communities in which they live.
DODD/DRO's claim that a community which serves the needs of people with disabilities is not integrated nor provides a meaningful life is made under the presumption that relationships between people who are disabled are not as valuable as relationships formed with non-disabled people. DAA categorically rejects this discriminatory view.
DAA asks the Ohio DODD to honor the relationships of the constituents it serves. Communities are being destroyed and friendships lost by closing homes and programs.
Welcome to Disability Advocacy Alliance
Act NOW to protect your loved one from
DRO's dangerous lawsuit.
JOIN OUR LETTER CAMPAIGN TO
Go to our Take Action page to send an electronic letter.
Open Letter to
DODD DIrector John Martin
Re: DRO's distortion of Olmstead at the expense of individuals with intellectual and developmental disabilities. Please read it HERE.
For additional information, please visit VOR at www.VOR.net. VOR is a national advocate for high quality care and human rights for all people with intellectual and developmental disabilities (I/DD).
Ohio's Home Health Care Crisis
The Columbus Dispatch published a three-part series in December which reported on the failures of Ohio's home health care system, calling it a system in "crisis." How can the DODD responsibly propose to move more vulnerable citizens into this system before addressing the concerns and safety issues of Ohioans already accessing waiver services? Find links to the Dispatch's reporting HERE.
Protecting the Rights of Ohio's Most Vulnerable Citizens
ICF Homes Provide $65 Million In Financial Benefits to the Ohio HCBS Waiver System. Learn more HERE.
Abuse, Neglect in OH Home Care System
In Nov. 2013, News Channel 5's (Cleveland) investigation found DODD failed to act despite reports of abuse, neglect, and failure to follow health regulations. Watch News Channel 5's reports HERE.
Letter to Governor John Kasich
Re: Disability Rights Ohio's lawsuit and the urgent need for separate and independent legal representation for fragile Ohioans harmed by DRO's litigation.
Letter to Attorney General Mike DeWine
Requesting separate and independent legal representation for fragile Ohioans harmed by DRO's lawsuit. Click HERE.