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Letter to Former 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.
July 27, 2020
The Ohio Department of Education (ODE) has proposed amendments to Ohio Administrative Code (OAC) that would allow a school to change the educational placement of a child with disabilities without parental consent. The rule changes specifically strike language that requires parental consent to be obtained before a child’s placement is changed.
The rule changes also remove a parent’s ability to have input on the selection of a mediator in a dispute with a school district that results in mediation.
DAA has filed public comment in opposition to the rule changes. Read DAA's comment submission HERE. DAA writes,
"Parental consent is required for initial evaluations, re-evaluations, and to begin special education services. A change in educational placement is an equally significant event and directly affects the decision-making involved in these other areas. For instance, when parents provide consent for services to begin, they are consenting to a specific set of services. If a child is later moved to a different program without consent of the parent, the initial consent to begin services is in effect over-ridden. In other words, by allowing a change in placement without parental consent, the State of Ohio has negated the initial parental consent to services, rendering the responsibility of initial consent meaningless."
"The suggestion that the parent is part of the IEP team, and therefore, will provide consent through the IEP process is not an acceptable substitute...The State of Ohio should not water down parental authority by having that authority subsumed by the dynamics of an IEP team. When a parent’s authority to consent to a change in placement is not specifically spelled out in law, it opens the parent up to being pressured or manipulated by IEP team members who may not share the same views and values as the parent, are less knowledgeable about the child’s needs, or may not have the best interests of the child at heart. Furthermore, absent the existing language, what is to prevent the school from changing a child’s placement before an IEP team meeting can commence? The answer is nothing. It is the language that ODE proposes to strike that prevents such an eventuality. "
We urge concerned citizens to send in their comments about the rule changes to ODE to preserve the authority of parents to determine the educational placement of their child with disabilities. Comments must be submitted by July 31st. Comments can be sent by email to email@example.com.
The proposed rule changes can be found on the ODE website. Click HERE. Scroll down to "OAC 3301-51-05 Procedural safeguards." The relevant language can be found on pages 4 and 18 of the PDF for this rule.
July 5, 2020
On June 23rd, ACLU, SEIU, and several partner groups filed a 36 page petition with the U.S. Department of Health and Human Services (HHS) concerning the coronavirus epidemic and calling for a 50 percent reduction in congregate care across the United States. ACLU refers to congregate care as nursing homes, ICFs/IID, psychiatric residential facilities, and home and community-based services (HCBS) group homes. As such, ACLU/SEIU attacks every form of residential services - institutional or community-based - except the family home or private residence. ACLU/SEIU requested a response from HHS in three weeks or else they will “proceed accordingly,” which many believe to be a sign that they may file a lawsuit.
DAA contacted VOR, a national disability advocacy organization, to work with families throughout the United States to respond to ACLU/SEIU’s unreasonable and irresponsible demands. The following response was sent by VOR on July 1st to HHS, the Center for Medicare and Medicaid Services (CMS), the Center for Clinical Standards and Quality (CCSQ), and the Centers for Disease Control and Prevention (CDC).
In VOR’s response, families of all forms of I/DD congregate care – ICF and HCBS – firmly reject ACLU/SEIU’s proposal to override the decision-making of millions of Americans - elderly and persons with disabilities - to their preferred form of health care and residential option.
Read VOR's response HERE:
Read ACLU/SEIU's petitionHERE:
June 10, 2020
DAA sent a letter to Ohio Department of Developmental Disabilities Director Jeff Davis urging DODD to work with providers of Vocational Habilitation and Adult Day Support programs on policy that will enable these programs to re-open while also protecting health and safety. Please see our letter at thislink.
DAA is concerned that policies to re-open are overly restrictive preventing many programs from resuming operations. Vocational Habilitation employers and Adult Day service providers are experts in the care of individuals with I/DD. The safest way to resume services is to include these experts in re-opening planning.
Vocational Habilitation and Adult Day providers have been closed for months, but are still incurring business expenses. If providers are forced to close permanently because the DD System did not give them a pathway to resume operations, the opportunities and friendships Ohioans with I/DD experience at these programs will be taken from them forever. We have all heard the warning, “Don’t let the cure be worse than the problem.” Ultimately, Ohioans with I/DD will pay the dearest price in reduced health and quality of life.
We encourage families to email DODD, your state senator, and state representative to urge them to bring providers to the planning table to develop workable and safe re-opening guidance. Clickherefor the best way to contact them.
April 24, 2020
Statement by DD Families on DRO Lawsuit Settlement
On Friday April 24, the U.S. Southern District Court of Ohio issued an Order approving a modified settlement in a lawsuit brought by Disability Rights Ohio (DRO) against the state of Ohio. The litigation was directed at pressuring the State to remove funding from the Intermediate Care Facility (ICF) program that serves the most vulnerable Ohioans with intellectual and developmental disabilities (I/DD). DD families’ intervention in the lawsuit was critical to the Court dramatically narrowing the class to protect and preserve the ICF choice.
Judge Edmund Sargus ordered protections for ICF families to be added to the settlement after receiving hundreds of objection letters and hearing hours of testimony from DD families opposed to settlement provisions. The settlement was modified to include the following commitments:
These protections are all the more important in light of the present Coronavirus epidemic and the resulting economic downturn. The State and DRO have repeatedly assured the Court and DD families the settlement will not affect the provision of ICF services or funding to ICFs. DD families note that the State had one month to withdraw the settlement upon ordering $14 billion in budget cuts on March 23rd. In his Order on settlement, Judge Sargus specifically recognized the commitments and representations State Defendants made to the Court:
“Defendants conclude (their brief to the Court ) with the following:
‘Defendants take commitments in the Agreement and their representations to the Court very seriously, and they will act in good faith to meet these commitments.’” (Order on Settlement, Doc 473, page 9)
ICF families will not forget this solemn commitment made by the State to the Court and to the thousands of ICF residents who are entirely reliant on the good will of others.
Opposition to the settlement arose because its provisions are primarily targeted at non-class members – people who prefer ICFs. The State and DRO crafted settlement provisions totaling approximately $100 million designed to push non-class members out of ICFs. These provisions include “options counseling” to pressure families to leave ICFs; 700 “exit waivers” (representing $70 million per year) to fund exits from ICFs; and financial incentives to ICF providers to pressure them to reduce and close ICFs. These provisions do not increase options for people with I/DD, as DRO wrongly alleges, but rather they undermine a primary care option - the ICF entitlement.
The unpopularity of settlement provisions is evident from the fact that the vast majority of ICF families refuse to meet with options counselors to discuss exit waivers. It is estimated that as many as 500-900 exit waivers remain under-subscribed since their allocations in 2015 and 2017. With the addition of this settlement, Ohio’s supply of unused and unwanted exit waivers rises to possibly as much $160 million in idle funding.
DD families urge the state of Ohio to heed the prescient words of Justice Anthony Kennedy in his concurring opinion in the U.S. Supreme Court Olmstead decision,
“It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 (ADA) to be interpreted so that states had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision...In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, States may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings, devoid of the services and attention necessary for their condition.” (Olmstead v. L.C. 527 U.S. 581, 610)
DD families ask that such activity cease in Ohio.
April 10. 2020
Governor DeWine has announced that state revenues will be dramatically reduced due to restricted economic activity and increasing unemployment associated with the COVID-19 outbreak. He has called for a 20% reduction in state spending, the equivalent of $14 billion in budget cuts. As such, in an April 10th letter, DAA urged Governor DeWine to reconsider and withdraw from the proposed
Ball v. Kasich settlement which includes $100 million in spending per year in perpetuity on highly unpopular and controversial policies. DAA writes,
"As the outbreak has caused young children to give up school, sports, and play dates, and many adults to lose jobs, your order to cut spending acknowledges that the state of Ohio must abandon past practices that are not in keeping with new realities. As such, we urge you to reconsider the proposed settlement of the Ball v. Kasich lawsuit. The settlement seeks a redesign of the Intermediate Care Facility (ICF) system that is opposed by Ohioans who access ICFs. It puts the ideological goals of an outside agency above the needs, choices, health, and welfare of your constituents with intellectual and developmental disabilities (I/DD), many with underlying medical conditions. We respectfully submit that a period of health crisis and economic downturn is not the time to push forward costly and unpopular system change that ultimately reduces and/or removes the health care of Ohio’s most vulnerable citizens. Reconsideration of the settlement will save the state as much as $100 million per year in perpetuity. Out of touch settlement policies include:
1. Options counselors contracted to encourage families to leave ICFs. An overwhelming majority of ICF families have refused to respond to counselors’ phone calls, refused counseling when reached, or refused to move their loved ones from ICFs after receiving counseling."
2. 700 new exit waivers to leave ICFs. Hundreds of exit waivers - estimated to be as many as 900 - already exist and have been under-subscribed since 2015. The state can save $70 million per year by not adding 700 more exit waivers to its existing, under-utilized allocation of exit waivers.
3. "Financial incentives to providers to convert, downsize, and close ICFs. Families oppose closing and downsizing ICFs because such policy curtails their loved ones’ access to health care, especially care that is only possible in large ICFs. Downsizing also drives up the cost of care as there is less sharing of resources in small settings."
"On a separate, but related note, Disability Rights Ohio (DRO), the agency that filed the Ball suit, has contacted you to request involvement in crafting protocol to prevent health care rationing on the basis of disability. DRO has little credibility in this regard. We submit to you that litigation against health care providers that serve disabled people (i.e. ICFs) causes health care services for people with disabilities to be rationed, (e.g. incentives to convert, downsize, and close ICFs). When an ICF downsizes or closes, disabled individuals lose health care – care that is life-sustaining."
"For these reasons, we urge you to withdraw from the proposed Ball settlement. Now more than ever, Ohio’s Medicaid system must address the practical realities of Medicaid beneficiaries’ health and welfare needs - not the ideological priorities of an outside party."
March 10, 2020
We have received concerning reports about options counseling, an initiative directed at families of Intermediate Care Facility (ICF) residents to encourage them to access community based services. DAA has put together the following information so that families understand their rights and are in the best position to advocate for their loved one.
Ashley McKinney, Department of Developmental Disabilities (DODD)
To print this information, click HERE.
February 22, 2019
ICF Guardians who intervened to fight the Ball v. Kasich lawsuit brought by Disability Rights Ohio (DRO) against ICFs/IID and sheltered workshops have issued a statement that is posted below:
ICF Guardians wish respond to the DODD's statementon the proposed revised Ball v. Kasich settlement:
December 18, 2019
The Columbus Dispatch reported on the December 17th fairness hearing for the proposed lawsuit settlement of the DRO class action. With its class action DRO sought to reduce or wholly eliminate intermediate care facilities for individuals with intellectual disability. It also attacked facility-based work and day programs.. The hearing took place in federal court in Columbus, Ohio. The full Dispatch article can be found at this link. Here is an excerpt:
"After listening to emotional testimony Tuesday from families for nearly six hours, a federal judge in Columbus declined to sign off on a proposed settlement in a class-action lawsuit over how and where Ohioans with developmental disabilities make their homes.
Rick Coulter and his adult siblings did all they could to keep their sister living in the family home instead of a residential center for people with severe developmental disabilities.
But without their mother, whom Coulter said had lived her own life as “both a magician and a miracle worker,” it became increasingly difficult to meet Cindy’s complex needs.
“We could not get good help; we could not keep good help,” Coulter testified Tuesday in U.S. District Court in Columbus.
He began to cry, and others in the packed federal courtroom did, too, as Coulter explained that his sister’s weight eventually dropped to 39 pounds.
“We tried to keep her home, and in the process nearly killed her,” he told Chief U.S. District Judge Edmund A. Sargus Jr.
Coulter, whose sister is now healthy and doing well in a residential center near Cincinnati, was among several people who offered emotional testimony urging Sargus to reject a proposed settlement of a class-action lawsuit accusing the state of violating the Americans With Disabilities Act.
Disability Rights Ohio and other legal advocates sued three years ago, saying Ohio’s services system often makes it difficult or impossible for people to obtain the Medicaid-funded waivers that allow them to live in their communities instead of institutions. "
The case has created a sometimes-bitter divide between lawsuit proponents and families such as Coulter’s, who fear the settlement will so prioritize community homes over residential centers known as intermediate care facilities (ICFs) that people with profound disabilities will be pushed into inadequate community settings.
Lawyers for the state and the plaintiffs had hoped that Sargus would sign off on the settlement after the hearing. Instead, after listening to opponents for nearly six hours, Sargus said he found the families’ concerns “legitimate.”
Monday December 9, 2019
A group of DD families who intervened in a federal lawsuit that seeks to remove ICF care in Ohio filed an objection to the proposed settlement of the lawsuit on December 2, 2019. Read their objection at this link.
Fairness Hearing: A fairness hearing is scheduled for December 17, 2019 at 9:30 am* at the federal courthouse in downtown Columbus, Ohio. Please attend the hearing to support the ICF families from around the state who objected to the settlement. The location is:
Joseph P. Kinneary Courthouse
85 Marconi Boulevard
Columbus, Ohio 43215
(*Arrive by 9:00 am and bring a picture id for security as you enter the building.)
Background: DRO sued the State of Ohio in 2016 claiming that 27,000 developmentally disabled Ohioans are "needlessly institutionalized in large ICFs or are at serious risk of institutionalization." Because DRO was attacking ICFs and claiming that all ICF residents want out of ICFs, a group of ICF families intervened in the lawsuit to protect the ICF choice. Judge Edmund Sargus allowed them in as parties.
Settlement: The DD families who intervened in the lawsuit to protect the ICF choice were excluded from settlement negotiations, and therefore, they did NOT agree to the proposed terms . The settlement will cost the State about $100 million annually in perpetuity. There is nothing in the settlement to protect the people on whose behalf DRO supposedly brought the lawsuit: ICF residents. The settlement exposes ICF residents to the risk of losing their ICF homes through lack of funding to ICFs or through conversions of ICF beds to waivers. The main terms of the proposed settlement between the State of Ohio and DRO are:
Monday June 11, 2019
Do you believe that individuals with disabilities and their families should drive health care and residential placement decisions? Disability Advocacy Alliance believes that individuals with disabilities and their parents and guardians have the most intimate knowledge of their condition and are in the best position to make decisions about where to live and what form their health care should take.
But, when individuals and families seek services from their County Boards of DD, they do not receive information about all service options – home and community based waiver services and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). When families receive only half the menu, care decisions are in effect being made for them.
DD families are working to provide meaningful reform with the Informed Choice Amendment that will require County Boards of DD to offer all service options to families, so that they can decide what is the best option for their loved one. The amendment states,
"When an individual with a developmental disability or a person acting on such an individual's behalf contacts a county board of developmental disabilities about the program and services offered pursuant to this chapter and Chapter 3323 of the Revised Code, the county board shall inform the individual or person about the different types of programs and services so offered, including both ICF/IID services and home and community based services."
(Click here to view language in budget bill that is under consideration. See section highlighted in yellow.)
Please ask your state senator and state representative to support the Informed Choice Amendment. (Go to this link to find your representative: https://www.legislature.ohio.gov/ (Scroll to the bottom right side of page.)
Friday December 7, 2018
Chief Judge Sargus issued an opinion on Friday afternoon rejecting DRO's third attempt to certify a broad class. Judge Sargus wrote: "Plaintiffs' arguments are not well taken." DRO originally sought to bring a case on behalf of 27,800 people. Now, the class has been narrowed dramatically down to, at most, 400. But Guardians who have intervened to protect the ICF entitlement argue that the class is nil, as the State of Ohio has under-subscribed exit waivers available to all ICF residents who wish to move to waiver services.
Also on Friday, Intervenor-Guardians filed their response to State and County Board Defendant's Motion to Dismiss Guardians' Crossclaims. Guardians' crossclaims are important and eminently necessary – Guardians are fighting back and standing up for the right of DD Medicaid beneficiaries to be informed of and ultimately access ICF care. Guardians' write in their response,
To be clear at the outset, Guardians are all for expanding choice. But the ICF choice – the entitlement from which people can then "waive" must actually remain a viable choice.
The gist of Guardians' Claims is simple: Defendants have systematically thwarted and denied the ICF entitlement to eligible residents. As a result today, thousands of eligible Ohioans sit on "wait lists" for "waiver" services not knowing they have an immediate entitlement to an ICF bed. This happens by design – the Defendants' design – not by accident. And it is illegal, meaning it violates both federal and state law.
VOR, a national nonprofit organization, supported Guardians' with the filing of an "amicus" or "friend of the court" brief. Read VOR's brief at this link.
Sunday November 4, 2018
In Ohio, Medicaid-eligible individuals with intellectual and developmental disabilities have an entitlement to services in an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF). Eligible individuals who wish to receive services in their home or other community setting, may waive this entitlement to access Home & Community Based Services (HCBS) (aka "waiver" services).
DAA has created two booklets that explain both options. Please click the links below. For comprehensive information and eligibility determination, individuals and their families should contact the Ohio Department of Developmental Disabilities or their County Board of Developmental Disabilities.
The ICF Choice Booklet – click HERE
The HCBS Choice Booklet – click HERE
State of Ohio Provider Listing for ICF & HCBS – click HERE
Friday September 14, 2018
On Friday, September 14, 2018, a dozen Ohio families filed claims against the State of Ohio and the Ohio Association of County Boards of Developmental Disabilities in a federal lawsuit pending in Columbus before Chief Judge Edmund Sargus, Jr. (Ball et al. v. Kasich et al., S.D. Ohio, Case No. 2:16-cv-282). The families also filed claims against Disability Rights Ohio (DRO), the state’s Protection & Advocacy agency, for failing to protect the rights of all people with developmental disabilities (DD). The families access facility and community based residential supports.
The case was originated by DRO in 2016, targeting Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs). ICFs provide comprehensive health care and personal care to roughly 6,000 Ohioans with intellectual and developmental disabilities. In 2017, ICF families were granted intervention in the case after the Court held that the rights of their loved ones to an ICF placement “are directly impacted in this lawsuit.”
Families simply want to preserve the right of developmentally disabled Ohioans to choose an ICF among an array of residential options. They feel strongly that moms, dads, sisters, and brothers are in the best position to make care decisions for their loved ones.
To read the families' claim, click HERE.
"Examining Class Actions Against ICFs/IID"
Tuesday March 6, 2018
Ohio families are grateful to the Constitution and Civil Justice Subcommittee of the House Judiciary Committee for holding a hearing
on Tuesday March 6 titled, "Examining Class Actions Against ICFs/IID."
Ohio parent Caroline Lahrmann was able to testify about Ohio families' concerns with the DRO class action. Also testifying were Peter Kinzler and Martha Bryant, both parents from Virginia whose children were forced out of their ICF home due to a Department of Justice class action in their state.
Lastly, Allison Barkoff from the Center for Public Representation testified in favor of class actions that attack Medicaid accommodations of the severely and profoundly disabled. Ms. Barkoff's organization has joined with DRO as co-counsel in the class action that threatens Ohio ICFs, sheltered workshops and facility-based day programs.
We encourage you to watch the video of the hearing HERE.
Written testimony of all witnesses can be found HERE.
December 22, 2017
ICF Families opposed class certification in the Ball v. Kasich lawsuit. Please find their legal brief HERE. Families state in their brief,
"Plaintiffs (DRO) are (rightly) in a panic. Recognizing that their original class definition is fatally flawed, they have attempted to solve their problem with a "new" definition. But this case is not about clever wordsmithing. Rather it is about the unique needs of tens of thousands who are incapable of being pigeon-holed into an artificially contrived homogenous class definition."
Families were disappointed that the Arc of Ohio filed a brief in support of DRO's class definition. It is odd because many Ohioans with disabilities who live in ICF homes and/ or attend sheltered workshops or facility-based day programs are or have been Arc members. It is our hope that the Arc of Ohio will support all people with intellectual and developmental disabilities -- even those who need and choose higher levels of care in ICFs, sheltered workshops and facility based day programs.
July 27, 2017
Ohio families of individuals who need and choose Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs) were granted intervention in the Ball v. Kasich class action filed by Disability Rights Ohio. This is a very positive developmental in this case as ICF families have been given a place in this fight to protect the interests of their vulnerable family members whose homes, sheltered workshops and day programs are put at risk by this litigation. Lead lawyer for the ICF families, William Choslovsky, stated,
“This is a great day for all intellectually disabled Ohioans. In his detailed opinion, Chief Judge Sargus nails it. He ‘gets it’ not just on a legal level, but also on a human level. As Chief Judge Sargus ruled:”
‘This litigation is complex and important. Excluding individuals with disabilities who will be directly impacted is not the appropriate way to make this case less complex.’ [Chief Judge Sargus, Opinion and Order, p.22]
“Only by having all intellectually disabled Ohioans at the table – both those who want to live in small settings and those, like our clients, who want to remain in their large settings – can all interests be addressed.”
“Put most simply, you don’t rob Peter to pay Paul. That is, expanding choice for some should not come at the expense of eliminating choice for others. Chief Judge Sargus gets that.”
Read Chief Judge Sargus' Opinion and Order HERE.
Read ICF Families Press ReleaseHERE.
June 8, 2017
TheColumbus Dispatch reports that nearly two dozen families filed motions in
federal court in Columbus to join in the effort of ten ICF residents and their guardians
to stop the Disability Rights Ohio class action lawsuit.
The lawsuit seeks to substantially reduce or wholly remove funding from Intermediate
Care Facilities (ICFs), sheltered workshops and facility-based day programs in Ohio
which provide care to individuals with severe and profound intellectual and
Families believe that this case should not be treated as a class action as the interests of the 5 plaintiffs do not reflect the needs and wishes of the thousands of fragile people across the state who need and choose higher levels of care.
If you wish to protect your family members' ICF home, workshops and day program, please email us at info@DisabilityAdvocacyAlliance.org to express your concerns and understand the rights of your loved one with I/DD.
May 26, 2017
VOR, a national organization which advocates for high quality care and the human rights of individuals with intellectual and developmental disabilities, requested permission from federal court to file an Amicus Brief in support of ICF residents' motion to intervene in the DRO lawsuit. ICF residents seek to intervene in order to protect their ICF homes, sheltered workshops and day programs which DRO hopes to remove through this litigation.
VOR writes in its brief,
"In order to fully and equitably resolve this case, the court will be confronted with the unenviable tasks of trying to fashion relief in such a manner as to protect the constitutional rights of thousands of Ohioans with unique requirements, needs, and preferences. To do so, the court should hear from more voices – not less."
Read VOR's Amicus Brief HERE.
May 24, 2017
Guardians of ICF residents seeking to intervene in the DRO lawsuit to protect their loved ones' ICF homes filed a reply in federal court to DRO's opposition to their intervention. In their reply, the families write,
"The Intervenor-Plaintiffs (the ICF residents) also make manifestly clear, that under well-established law, this case is not appropriate for class treatment. Matters as personal as where and with whom one chooses to live and what form their daily health care should take should not be decided by those with competing interests and especially when those parties are ignorant of the Intervenor-Plaintiffs’ needs and dismissive of their choices. It is clear Plaintiffs’ counsel misapprehends its own constituent base and their desire to access and benefit from the same rights held by all other Americans."
Read the families Reply HERE.
May 10, 2017
The State of Ohio filed a response in support of ICF residents' motion to intervene in the DRO lawsuit writing,
"The Intervenor ICF Residents have been pulled into a proposed class that seeks to close their homes and workshops. Their intervention should be permitted so that they may defend these interests."
The State makes clear the difference between the families' position and its own, indicating in its response that it wishes to "rebalance" the DD system by downsizing ICFs and converting ICF beds to waivers. This position stands in stark contrast to that of the families that believe in maintaining a vibrant and robust ICF system that reflects the continuum of care – both large ICFs that can serve people with severe and profound needs and small ICFs – as well as a strong network of waiver homes. The families also feel that all forms of care – ICF and waiver – offer community integration.
ICFs which have already downsized are not safe from the DRO's attacks. DRO states in its July 1, 2014 letter to the Kasich administration,
“...moving from a large facility to a smaller facility will not mitigate the inherent segregation... By committing to construct and maintain these new facilities, the State is subjecting yet another generation of Ohioans with development disabilities to a life of segregation.
Read the State's response HERE.
May 1, 2017
On April 29, 2017, parents, siblings and guardians serving as pro se counsel for their family members with severe and profound intellectual and developmental (I/DD) disabilities filed a motion on April 19, 2017 in federal court to intervene in the class action brought by Disability Rights Ohio (DRO) against the state of Ohio over its Developmental Disabilities system.
The individuals with disabilities choosing to intervene wish to preserve their Intermediate Care Facility (ICF) homes which they rely upon for life-sustaining care such as licensed nursing, therapy and behavioral supports, personal care and 24-hour supervision. These services are vital to addressing their manifold disabilities that include, but are not limited to, severe and profound intellectual disabilities, autism, maladaptive behaviors, quadriplegia, epilepsy, non-verbal and some requiring feeding through a gastrointestinal tube. DRO also attacks the sheltered workshops and day programs these individuals benefit from for productive opportunities and social interaction.
To read the Motion to Intervene of the 10 individuals and their guardians, click HERE.
A press release announcing the filing can be found HERE.
To read DRO's lawsuit, click HERE.
Families are fundraising to hire legal counsel to protect the interests of individuals relying upon ICFs, sheltered workshops and facility-based day programs, all of which are under attack in this litigation. To learn how you can donate, please read the notice directly below titled Donations Needed.
Donations Needed for Legal Counsel to Protect Against Harm of DRO Lawsuit
April 30, 2016
Disability Rights Ohio has filed a lawsuit against the state of Ohio which seeks to impose substantial changes to Ohio’s system for
caring for persons with intellectual and developmental disabilities. The lawsuit attacks the disability care model involving ICFs, sheltered workshops and facility-based day programs and asserts that “virtually any person institutionalized or at serious [risk of] institutionalization in a large ICF can be served safely and successfully in an integrated, home and community-based setting."
Disability Advocacy Alliance fully supports the full continuum of care for individuals with I/DD, including community settings. However, parents and guardians know that there is a diverse range of disabilities and not everyone can handle or benefit from community settings. We believe that the clear intent of the current lawsuit is to take away substantial funding from ICFs, sheltered workshops and facility-based day programs and to shift that funding to programs in community-based settings.
We are raising funds for legal counsel to participate in the lawsuit to ensure that the interests of individuals in Ohio who depend upon higher levels of care are brought before the court. Please learn more about our effort HERE.
Please consider contributing. Click HEREfor the donation form.
Thank you for protecting the rights of individuals with intellectual and developmental disabilities.
DAA Responds to TASH's Dangerous Rhetoric
April 28, 2016
The following editorial was published in the Columbus Dispatch on April 28, 2016.
Disability Advocacy Alliance, an organization formed by parents, guardians and family members of Ohioans with intellectual and developmental disabilities, wants to correct the dangerous rhetoric put forth in the April 25 letter “Close institutions for disabled” from Elizabeth Trader of TASH.
Ohio’s developmental-disabilities service system offers many residential options, from intermediate-care facilities of various sizes to disability-specific farms to group homes. And there is an array of employment options, including sheltered workshops, facility-based day programs and competitive employment. The nearly 50,000 people served can safely address their individual and often acute needs. What’s more, legislators injected an additional $300 million into the system in July 2015.
Ohio’s system fulfills the mission of the Americans with Disabilities Act 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.
Disability Rights Ohio’s (DRO) lawsuit would destroy the continuum of care and remove the right of self-determination. Individuals with intellectual and developmental disabilities and their families have been fighting DRO for decades.
We’re not swayed by TASH and DRO’s suggestion that specialized programs for people with disabilities are segregated, and we reject their notion that the value of a disabled person’s life is dictated by the degree to which he can handle “community” settings. Family members have learned too many life lessons from their disabled loved ones to be prejudiced by such ignorant thinking.
The state of Ohio should stand proudly in defense of the programs its residents have created to care for individuals with intellectual and developmental disabilities. Doing so will fend off bullies with a political agenda who tend to prey on the most fragile and voiceless.
Disability Advocacy Alliance
Ohio Governor John Kasich Tells Protestors in New York Who Were Promoting Community Settings For All - Regardless of Need and Choice - "I am going to do everything I can to help you"
April 15, 2016
On April 9, 2016 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." Click HERE for new report.
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.
April 4, 2016
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.
March 30, 2016
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.
DRO's complaint can be found 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, intentional communities, sheltered workshops, and day program settings. And they enjoy relationships with family, friends, and volunteers in the larger communities in which they live.
DODD/DRO's claim that a specialized community that serves the needs of people with intellectual disabilities is not integrated and does not provide a meaningful life is made under the presumption that relationships between people who are intellectually 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 ICF homes and programs.
Protecting the Rights of Individuals with Intellectual and Developmental Disabilities
Receive email updates and news from DAA.
Letter to Former Attorney General
Requesting separate and independent legal representation for fragile Ohioans harmed by DRO's lawsuit. Click HERE.
ICFs, sheltered workshops and day programs are valued by Ohioans with developmental disabilities. Over 21,000 signatures were lodged with the Ohio Assembly in support of these programs in Spring 2015.
Open Letter to Former
DODD DIrector John Martin
Re: DRO's distortion of Olmstead at the expense of individuals with intellectual and developmental disabilities. Please read it HERE.
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