The institution for the intellectually disabled is serving a dwindling population at the huge cost of $1,000 per client a day. (Carolyn Lumsden / Hartford Courant)
The Southbury Training School is an obsolete, rundown institution that hasn't admitted any new residents in 30 years. The state has to commit to closing it. Its wild overtime costs continue to suck taxpayer money that could be better spent serving many more people with intellectual disabilities at much more reasonable cost in smaller private facilities.
One state worker at Southbury, for example, pumped up her $60,000 base salary to a hard-to-believe $196,000 with overtime this past fiscal year, The Courant's Josh Kovner has reported. With fringe benefits, she earned $237,886 — more than Gov. Dannel P. Malloy makes.
Four of her colleagues earned an are-you-kidding-me $100,000 each in overtime. Another 50 earned $50,000 or more in OT.
Altogether, Southbury's 615 full- and part-time employees (serving just 229 clients) earned an average of $20,000 each in overtime.
This is an extravagant waste of public money. Moreover, it's inhumane to work people too many hours. Long hours lead to high injury rates and poor performance, and that could endanger the elderly, vulnerable residents of Southbury.
The state is paying too steep a price to keep open an outmoded institution serving a dwindling population at the huge average cost of $360,000 per client per year — nearly a thousand dollars a day. It costs half of that or or less to care for a client in a private facility.
But the state agency that runs Southbury Training School has yet to report to a legislative committee on how to close the exorbitant institution, as it was ordered to do back in late 2015. You'd think a state financial crisis would speed the agency up.
A spokeswoman for the agency, the state Department of Developmental Services, says that personnel spending is actually down at Southbury. What's driving costs up are such things as state pension debt, she says.
Well, no wonder. Overtime is part of state workers' pension calculation. Pension padding is helping to put Connecticut state government in a financial ditch, yet it continues.
Money For Some, Not Others
Southbury isn't alone among state-run institutions with out-of-control overtime costs. A worker at an institution in Newington was paid $150,000 in OT in the last fiscal year, on top of his $57,000 salary. For two years in a row, his total compensation was at least $262,000.
Yet there's no money in the governor's budget proposal for day programs for the intellectually disabled. Nor is there money for the 2,100 families on the waiting list for services or residences for their disabled relatives.
While state employees run up overtime to astronomical levels, the vast majority of intellectually disabled people are served by the private sector, where the cost is half or less, with no difference in quality — or they're not being served by the state at all, but are being cared for at home, often by aging parents.
Some of the families of those on the waiting list and others have called for Southbury to close by 2020 and for its clients to be moved to smaller private facilities, where they'll be cared for well but not so wastefully. The families have been unable to get a commitment from either the governor or the legislature.
So they wait for years, sometimes decades, for a place for their disabled loved ones to live, while workers at state institutions earn outrageous sums that eat up state funds. How is this fair?
As the three national Developmental Disabilities (DD) Network partners that represent the entities authorized in the DD Act whose members annually advocate for and provide hundreds of thousands of clinical services and home and community based supports to people with disabilities and their families, the Association of University Centers on Disabilities (AUCD), the National Disability Rights Network (NDRN), and National Association of Councils on Developmental Disabilities (NACDD) are concerned about the policy brief distributed by the House Republican leadership on Thursday, February 16th to its Members about repealing and replacing the Affordable Care Act (ACA).
The goals of the policy brief distributed last week are to "put Medicaid on a budget" and to "return the focus of the program back to helping those most in need."
While these two goals sound reasonable, they will likely result in constraints that will harm people with disabilities and those who support and serve them. We are concerned about three specific items in the policy brief: 1) proposed per capita caps with the option for block grants, 2) proposed Health Savings Accounts, and 3) "next generation high risk pools."
The proposed per capita allotment to be paid to states for each person eligible for Medicaid will threaten the long-standing guarantee to provide health care and support services to people with disabilities. Block grants would similarly cap the amount of money each state receives without allowing for adjustments when there are changes to health care costs, population growth, or in response to economic downturns, or natural disasters. In 2014, there were almost 600,000 people with disabilities waiting for home and community based services from Medicaid. With the introduction of per capita allotments to states, it is only likely this number will increase. We have only to look at the cuts to Medicaid Texas made last year to see the reduction in services for those with disabilities.
The proposed health savings accounts also are of great concern. While designed to increase consumer control over health care costs, this is often not possible for people with disabilities. Living in rural or frontier America, or even in medium size cities, people with disabilities often have no choice about their health care and durable medical equipment providers. In addition, the amount of money allotted in a health savings account is often only a fraction of the cost of annual care for a person with a disability.
We are also concerned about the high risk pools described in the policy brief as State Innovation Grants. Without adequate funding, high risk pools will either deny coverage to some of those in need or the state pools will offer limited services. Either way, those with disabilities will suffer.
We urge the House Republican leadership to offer a plan that protects people with disabilities from the discrimination they experienced prior to the implementation of the Affordable Care Act and to ensure people with disabilities will have access to health care and support services. Health care coverage that does not include durable medical equipment; rehabilitative, habilitative, and mental health services; and preventative services will greatly harm the health and well-being of people with disabilities.
We look forward to working with the House leadership and all Members as Congress considers revisions to the ACA and Medicaid. For more information please contact: Kim Musheno (email@example.com), Eric Buehlmann (firstname.lastname@example.org), and Cindy Smith (email@example.com)
The governor on Friday formally announced his plan to expand housing opportunities and services for people with intellectual disabilities.
Gov. Dannel P. Malloy included $3.8 million in his proposed budget for what he termed the "intellectual disability partnership initiative." The goal is to reduce the waitlist for people with intellectual disabilities who need state-funded housing and to find new ways to address the need.
Malloy also proposed $1 million in bonding funds to convert group homes to supportive housing units, residential care homes or community care homes for people with intellectual disabilities.
"Although we have set aside $1 million on the capital side we will put as much money into this fund to make those conversions ... as can be used," Malloy said Monday morning at an Oak Hill facility on Coventry Street. Oak Hill is a large private provider of services to people with disabilities.
Of the $3.8 million allocated by Malloy, $1.8 million would go to for pay parity. Private service providers typically are paid less than state employees who do the same work.
"This will allow lower-rate providers to be increased without taking money away from those folks who are doing such a good job already," Malloy said. The state continues to move toward privatizing such services, Malloy said.
Malloy said $1 million of the $3.8 million is to find ways to more efficiently use the Department of Developmental Services' half billion dollar budget to serve more people.
"The [intellectually disabled] community would like to see more people served," Malloy said. "I would like to see more people served." And there are less expensive ways to provide services, Malloy said.
Of the 16,000 clients of the state Department of Developmental Services, only a little more than 800 live in state facilities — but those locations receive a disproportionate amount of funding for overtime and other expenses. State workers at the largest institutions routinely double their base salaries with overtime. Still, they have the support of the families of the clients they serve. That fervent support has helped to slow the pace of the planned privatization of as many as 40 state group homes. Malloy has pushed these conversions, a trend nationally, as a money saver for Connecticut. Two regional campuses in Meriden and Stratford have closed, but not all the residents have moved into private settings.
Malloy has also proposed shutting down the on-campus fire department at the Southbury Training School. The department has remained even as the school's population dwindled to fewer than 250 residents and the unused portions of the complex are being mothballed.
In 2014 the chief, assistant chief and 12 firefighters shared nearly $600,000 in overtime. Total costs for the fire department came in at just under $2 million that year.
"The time is coming that Southbury as we know it will not exist," Malloy said. He said he does not expect the training school to close within the next two years, but as the population at the school continues to shrink there will be more discussions about how to serve the people who live there.
With Gov. Malloy’s budget proposal out in the open, here are a few things to know about what it entails.
Advocates for the more than 16,000 people with intellectual disabilities who are served by the state are reacting favorably to some aspects of Gov. Dannel P. Malloy's proposed budget, including an increase of about $4 million to, among things, help create more community settings for people now living in state facilities.
They also applauded the closing, at a savings of $1.6 million, of the on-campus fire department at the Southbury Training School — a unit that has hung on year after year as the population has dwindled to fewer than 250 residents and the unused portions of the complex are being mothballed.
But there was despair over the lack of funding for day programs and job training for high school graduates in 2017 and 2018 — as many as 600 young people who are turning 21 and will have completed their federally mandated schooling. For decades, these graduates went fairly seamlessly into the social, recreational, and skill-building programs for young adults. In the last few years, funding cuts have restricted these opportunities.
"So they go from a relatively enriching school environment, with a focus on transitioning to adulthood, to nothing — no programming," said Shannon Jacovino, of The Arc Connecticut, which has mobilized thousands of families to press Malloy and the legislature for expanded and improved services within the existing budget of the Department of Developmental Services.
Jordan Scheff, the acting commissioner of the DDS, said making up for the lack of funding for new high school graduates is a challenge facing the department, one that requires "efficiencies … cooperation, collaboration and innovation" in other areas of the $525 million-a-year agency.
He said a portion of the nearly $4 million a year that Malloy added would help some of the families on a lengthening waiting list for residential placements and in-home supports. And for the first time in years, DDS would be able to raise the payment rate for a group of private providers. The private, non-profit agencies who have contracts with DDS serve the vast majority of the department's clients.
Tom Fiorentino of West Hartford, the father of a young man with an intellectual disability, said Malloy's budget proposal is a "mixed bag" that suggests he's heard the call of thousands of parents who have attended protests and public hearings at the capital, but that still falls short of reforming the system.
"We are gratified he has proposed positive steps to address the residential waiting-list crisis," said Fiorentino, a former assistant state attorney general who is president of the board at The Arc Connecticut. "At the same time, we are deeply concerned that his budget contains no funding for new graduates."
Of the 16,000 clients of DDS, only a little more than 800 live in state facilities — but those locations receive a disproportionate amount of funding for overtime and other expenses. State workers at the largest institutions routinely double their base salaries with overtime. Still, they have the support of the families of the clients they serve. That fervent support has helped to slow the pace of the planned privatization of as many as 40 state group homes. Malloy has pushed these conversions, a trend nationally, as a money saver for Connecticut. Two regional campuses in Meriden and Stratford have closed, but not all the residents have moved into private settings.
Scheff said the closing of the fire department at the Southbury Training School "has been under discussion for some time."
He said the responsibility of answering emergency calls at the campus will fall to the town of Southbury, which has volunteer fire and emergency-medical units.
"DDS will continue working with the town … to make sure the transition is a smooth one, and that all residents' emergency needs will continue to be met," Scheff said.
Jeff Manville, the Southbury first selectman, did not immediately return phone calls seeking comment. Former First Selectman Ed Edelson told The Courant in 2015 that the town expected that coverage of the state campus would eventually shift to the town.
Over the years, the state firefighters based at the Southbury campus have responded thousands of times to assist town crews or to handle calls when those crews were tied up. The town was never charged a fee.
The state firefighters also have inspection and fire-prevention duties. The Courant reported in 2015 that the chief, assistant chief and 12 firefighters shared nearly $600,000 in overtime in 2014. Total costs for the fire department came in at just under $2 million that year.
Julie Swanson, of Durham, is the mother of a grown son with autism and a special education advocate. She is part of group that has joined with the state in its appeal of a Superior Court judge's ruling that would radically change the way public education is funded in Connecticut. Swanson and advocates across the state were stunned by Judge Thomas Moukawsher's suggestion that school districts could deny educational services to profoundly disabled students. (Cloe Poisson)
Parents and advocates have joined in the state's appeal of a judge's ruling striking down Connecticut's school-funding formula, seizing on language that described some children with profound developmental disabilities as possibly incapable of learning and unworthy of local education dollars.
"These were the arguments of the 1940s and 1950s, when they wanted to keep children in institutions," said Shira Wakschlag, the lead lawyer for The Arc in Washington, D.C.
"Not only does it violate federal law, it flies in the face research that says that even children who do not look like they are learning, are taking in information," Wakschlag said.
Her organization has joined the Connecticut chapter of The Arc, a constellation of national disability-rights groups, and a dozen Connecticut parents of students with developmental disabilities, in the filing of three amicus briefs. They serve to complement Attorney General George Jepsen's appeal of Superior Court Judge Thomas G. Moukawsher's decision in September.
In sworn affidavits collected by special-education lawyer Andrew Feinstein, the parents described battling school districts for educational programming for their children and the progress that many of the children made when they were given the chance. As the children grew, the parents said, in many cases they required less medication and less intense staff supervision, and became markedly more independent.
Julie Swanson Augeri's son, Alex, has autism, an intellectual disability, and doesn't speak. Beginning when he was 3 years old, Swanson Augeri, of Durham, had to battle for services far more extensive than school officials were prepared to offer.
"Had I accepted the minimal progress and outlook that many in the system expected for him, I feel his behaviors and lack of skill would have become barriers to a meaningful life," Swanson Augeri said in her affidavit.
In an interview, she said, "Alex would have been one of the children the judge was talking about, as not being worthy of an education."
Now 22, Alex, works at horse farm, volunteers at a hospital, has a host of friends, and is independent in most of his daily activities. Had he not had the opportunity to progress in school, he would require much more public funding for his support than he does now, Swanson Augeri said.
"He has a life full of meaning," she said.
The national groups said they felt compelled to join in the appeal because the implications of the judge's opinions on special education were too explosive to ignore. And the stakes are even higher now, they said, as Betsy DeVos, President Donald J. Trump's nominee for secretary of education, seeks confirmation from Congress. DeVos favors leaving special-education funding decisions up to the school districts in individual states, which often balk at the costs. Her opponents point out that federal law guarantees a free and appropriate education for all students, including those with disabilities.
"When she said special education should belong to the states -- that is just frightening and of course it violates federal law," said Nancy Alisberg, the top lawyer for Connecticut's Office of Protection and Advocacy for Persons With Disabilities.
Alisberg assisted the National Disability Rights Network, based in Washington, D.C., in filing its amicus brief with the Connecticut Supreme Court.
Moukawsher ruled in a longstanding lawsuit pitting an atypical coalition of teachers and school administrators, and cities and suburbs, against the administration of former Gov. M. Jodi Rell. He rightly pointed out inequities in a state with both impoverished schools and sublimely wealthy ones, but he ventured into areas that are the responsibility of elected lawmakers, not a single appointed judge, say critics of the ruling.
The judge found that the state's funding of education met the Constitutionally required minimums, which was a blow to the coalition's case and is where Jepsen wanted him to stop. But the judge went further, saying the system by which the state funds schools was "irrational" and often not linked to teaching children. Ruling in September 2016, he gave the legislature until March to propose a new system which he would assess.
And he went further. Referring to special education, the judge said, in part, "The call is not about whether certain profoundly disabled children are entitled to a 'free and appropriate education.' It is about whether schools can decide in an education plan ... that the child has a minimal or no chance for eduction, and therefore the school should not make the expensive, extensive, and ultimately proforma efforts."
That language, said Feinstein, one of the state's most seasoned education lawyers, "would give school boards license to provide substantially less services. As it stands now, many skimp anyway, and some just babysit."
Intentionally or not, Moukawsher's ruling "pits special education students against regular education students," said Shannon Jacovino of The Arc Connecticut. "If this happened with students' race or religion, there would be a massive outcry."
Wakschlag, of The Arc in Washington, D.C., said research shows that non-disabled students benefit on many levels from having disabled students in class.
Both the coalition and the state view Moukawsher's ruling as flawed and are appealing. Among the arguments of Jepsen and Associate Attorney General Joseph Rubin are that Moukawsher's ruling is overbroad, and that he ventured into policy areas that are the province of an elected legislature.
In an op-ed piece in The Courant a month after the ruling, Moukawsher revealed that he has struggled most of his life with attention-deficit/hyperactivity disorder.
"[W]e are entitled to be judged as individuals and, as we all should be, with reason and common sense," Moukawsher wrote of those with similar impairments. "After having said nothing about this to virtually anyone at any time, I think it may be worth it for someone in my position to share my story and assert my conviction that our group is everywhere, is of every stripe, and can do everything."
Moukawsher did not say why he chose to raise questions in his ruling about whether schools should pay to educate certain children with profound disabilities, a position that Feinstein described in his brief as nothing less than "utterly cruel."
Rhonda Stearley-Hebert, spokeswoman for the Judicial Branch, said Moukawsher can't comment on his ruling because the code of conduct bars judges from remarking about pending matters.
Jepsen said he welcomed the amicus briefs.
"We are in agreement," Jepsen said in an interview. "This decision violates federal law. Speaking personally, as a citizen, my heart goes out to these families."
WASHINGTON — In a case that could affect the education of 6.7 million children with disabilities, the Supreme Court on Wednesday struggled to decide whether it should require public schools to do more under a federal law that calls for them to provide a free education that addresses the children’s needs.
Justice Samuel A. Alito Jr. said the court was being asked to choose among several finely shaded formulations. “What is frustrating about this case and about this statute is that we have a blizzard of words,” he said.
The court appeared uneasy with a standard used by many appeals courts, which have said that providing a modest educational benefit was enough. But some of the justices indicated that they were concerned about the costs that any changes could impose.
Justice Stephen G. Breyer said that a new standard might also invite costly litigation. “If we suddenly adopt a new standard, all over the country we’ll have judges and lawyers and people interpreting it differently,” he said. “I foresee taking the money that ought to go to the children and spending it on lawsuits and lawyers and all kinds of things that are extraneous.”
The case concerns an autistic boy whose parents, unhappy with his progress at his public school in Colorado, enrolled him in a private school and sought reimbursement for the tuition, currently around $70,000 a year. Under the Individuals With Disabilities Education Act, children with disabilities are entitled to a free public education that addresses their needs.
The lower courts have disagreed about what kind of programs public schools must provide. In the Colorado case, a federal appeals court ruled that a modest benefit to the boy was enough and that no tuition reimbursement was warranted.
Neal K. Katyal, a lawyer for the school district, pointed out that in the first half-hour on Wednesday two lawyers proposed nine different standards. For his part, he said an educational program was sufficient if it provided benefits that were “more than de minimis,” the standard used by the appeals court in the case Endrew F. v. Douglas County School District, No. 15-827.
Several justices expressed concerns about the potential financial burdens on school districts. “Is there any place to discuss the cost that would be incurred for, say, severely disabled students?” Justice Anthony M. Kennedy asked.
Justice Alito also appeared wary. “No matter how expensive it would be and no matter what the impact in, let’s say, a poor school district would be on the general student population, cost can’t be considered?” he asked.
But lawyers for the boy’s parents and for the federal government, which largely supported their position, said that as a general matter the schools must pay whatever the programs cost.
Jeffrey L. Fisher, a lawyer for the parents, said most cases did not require schools to spend very much. “They involve things like providing Braille textbooks, providing an iPad, providing some specialized instruction by a staff member who’s already on staff,” he said.
But he added that “there are going to be some extreme cases.” In those situations, he said, referring to the federal law, “the act does not permit cost to trump what the act otherwise requires.”
Mr. Fisher said public schools should be required “to provide substantially equal educational opportunities” to disabled children, but that proposed standard met resistance.
Justice Ruth Bader Ginsburg said the court had tacitly rejected it in a 1982 decision, Board of Education v. Rowley. Justice Elena Kagan said she had “some feeling that the word ‘equality’ is a poor fit for this statute.”
Mr. Fisher proposed an alternative for justices uncomfortable with the word “equal.” He said the court could require “a level of educational services designed to allow the child to progress from grade to grade in the general curriculum.”
Several justices said that standard could not be achieved for students with severe disabilities.
In those cases, said Irv Gornstein, a lawyer for the federal government, the court should use a different standard, one where he said “we have a slight area of disagreement” with the boy’s parents.
“We would say significant progress toward grade-level standards, not as close as possible to grade-level standards,” Mr. Gornstein said.
Justice Sonia Sotomayor asked if the court could substitute “meaningful” for “significant.” Mr. Gornstein responded that the two were synonymous, adding that he would also be content with “appropriate.” But he asked the court to avoid “meaningful” because “it means different things to different courts.”
Justice Kagan responded that whatever standard the court announced might have the same problem. “So we should come up with our own that can then be applied in different ways in different courts?” she asked.
That was the challenge, Justice Alito said. “What everybody seems to be looking for is the word that has just the right nuance,” he said.
The Prism Project at the Hartt Community Division is a performing arts experience for students with execptionalities. Students ages 7-14 years will have the opportunity to practice important social skills while participating in rehearsals for a performance on April 30, 2017. Each student performer will be paired with a University student buddy who will be their one-on-one guide and support at every rehearsal and during the performance. The Prism Project is modeled after the program at Ball State University in Indiana. Rehearsals will take place on Sundays from 1-2:30 p.m. beginning on January 29 at the Hartt School. Students of all abilities are encouraged to participate. Please contact Jackie Smith, Prism Program Director. at firstname.lastname@example.org for more information.
As with other pageant competitions, the title of Ms. Wheelchair Connecticut comes with a sash. But it also comes with responsibility.
The event uses a twist on the idea of a traditional beauty pageant to give women who rely on a wheelchair more visibility. And that is what the newly crowned Ms. Wheelchair Connecticut, Shannon Mazurick of Avon, liked when she heard about the pageant.
Mazurick, 30, has cerebral palsy and uses a wheelchair to get around. It's difficult for Mazurick to speak so she uses a computer program to put words she types on a keyboard into speech.
"Advocacy has always been a huge part of my life," Mazurick, wearing a red dress with the sash draped across her chest, said in a recent interview. "I feel it is so important. And Ms. Wheelchair, the organization or the pageant, deals with advocacy."
Connecticut has not had a title-holder since 2006, when Denise Woodilla won the crown. Mazurick found out about the pageant late last year when she attended a presentation by its national title holder at Chapter 126 Sports & Fitness in Bristol, an adaptive gym for disabled athletes where Mazurick works out.
Speaking that day was the 2016 Ms. Wheelchair America Alette Coble-Temple of California, who was asked by national pageant organizers to visit Connecticut in the hope that her words would inspire someone to restart the program in this state.
Mazurick said she thought she was perfect for the title — she has lived her entire life with cerebral palsy while graduating from high school and earning bachelor's and master's degrees. She also wrote a series of children's books.
Stephanie Deible, Ms. Wheelchair America's national director, said Mazurick will be expected to find opportunities to speak out on the needs of people with disabilities. She also has been asked to organize a Ms. Wheelchair pageant for Connecticut later this year, the first one in the state in a decade.
Deible said to be eligible for the competition, contestants must rely on a wheelchair in their daily life.
"We look for someone with experience advocating for people with disabilties, who is a good communicator and can spread awareness about people with disabilities," Deible said. "Looks and appearance are not judged."
Mazurick has spoken at schools, the state legislature and other groups about the needs of people with disabilities. Mazurick said she saw another opportunity to do this with the pageant. She applied to the national organization to represent the state and in December was named Ms. Wheelchair Connecticut.
"I am passionate about advocating for the disabled community not only because I was born with a physical disability but because my father struggled with multiple sclerosis," she said.
"The state programs fluctuate from year to year because we are an all-volunteer organization and we are actively recruiting in states that don't have a program," Deible said. She said usually 25 to 30 states crown a winner each year.
In addition to laying the groundwork for a state pageant, Mazurick said she is raising money to attend the national Ms. Wheelchair America contest, which will be in August in Erie, Pa.
The Disability Integration Act, or DIA, would provide a clear mechanism for enforcement to keep disabled people out of institutions.
WASHINGTON, DC - NOVEMBER 16: U.S. Sen. Charles Schumer (D-NY) leaves after an election meeting of Senate Democrats to elect new leadership at the Capitol November 16, 2016 in Washington, DC. Sen. Schumer was elected as the incoming Senate minority leader. (Photo by Alex Wong/Getty Images)
There is perhaps no greater stakeholder in the conversation about health care in the United States than the disability community. And with uncertain policy changes ahead, many disabled people are worried. They’re also trying to take action while they can to protect themselves from threats to their lives and well-being.
That’s one reason why some disabled people are pushing Congress to pass the Disability Integration Act (DIA), a law that would codify the right to community-based services for disabled people and provide a clear mechanism for enforcement to keep them out of institutions. If they succeed, the law could be a powerful tool for civil rights in the coming years—but it likely has a slim chance of passing, considering the incoming administration and Congress.
Many nondisabled people are not familiar with the fight for deinstitutionalization and the push for community-based living. Well through the 1970s, nondisabled people broadly viewed institutions as the most appropriate place for disabled people in need of long-term support services, whether they needed mental health care or medical treatment for physical impairments. In theory, they offered secure and safe housing along with trained personnel to help people with activities of daily living (like bathing and dressing) as well as sometimes complex health-care needs, which might include feeding tubes, dressing changes, and other types of skilled nursing care. In practice, however, institutions often had an isolating effect, locking disabled people out of society and exposing them to the risk of physical and sexual abuse from indifferent or hostile caregivers.
The resurgence of the disability rights movement in the 1980s pushed for a shift in the way nondisabled society viewed institutions, building up support for deinstitutionalization that culminated in the Americans with Disabilities Act (ADA) of 1990. The law strongly encouraged giving disabled people the tools to live in their own communities, including robust anti-discrimination protections.
In contrast to institutions, the provision of home and community-based services (HCBS) can allow people to live independently or semi-independently out in the world as equal citizens. Such services include aides and personal assistants, who may live with their clients or rotate shifts to ensure that individuals have 24/7 help with medical needs and tasks like attending events, going to school, and engaging with the community. In addition to being provided at home to people living independently or with family, another option for HCBS is small group living with other disabled people. Group home settings are still firmly rooted in often residential neighborhoods in towns and cities, rather than being maintained as separate and sometimes hard-to-access specialized facilities—it’s a house with a bunch of disabled roommates down the street, not the place you visit Aunt Liza in twice a year. This ensures that their residents get out and about rather than being trapped inside grim institutional settings.
Perhaps counterintuitively, research indicates HCBS programs are less expensive to administer and provide than institutionalization; it is cheaper per person in most cases to care for people at home. These programs can necessitate more complex organizational costs, as they require more coordination, but that cost is balanced out by the savings on providing services. Despite this fact, many disabled people have trouble accessing them. Both government benefits programs and private insurance have spending caps that are easy to exceed, along with service limits, like arbitrarily assigned hours limits on aides—so, for example, someone who needs 24/7 care might get 12 hours of daily care funded by her benefits program. An agency responsible for funding determinations may also make an incorrect determination about the level of care needed.
Considering those existing difficulties, paired with how the provision of health care and support services will change under the Trump administration, advocates—including disability rights group ADAPT, the United Spinal Association, the National Council on Independent Living, the National Disability Leadership Alliance, and many others—are trying to rekindle interest in the DIA. The exact nature of the changes under Trump aren’t clear, but could include reductions in funding to programs like Medicaid, which would hit disabled people extremely hard. Many rely on Medicaid and Medicare for services because they cannot afford to purchase health insurance or directly pay for services independently. Medicaid expansion through the Affordable Care Act shifted more disabled people to Medicaid, but also put more people in danger of spending cuts. If a clear mandate for community-based living is not enshrined in the law, it’s possible those people will be forced into institutions.
This is something Kayla Whaley, a children’s author with spinal muscular atrophy who uses a wheelchair for mobility and needs assistance with many activities of daily living, is very worried about. “I currently live at home with my parents,” she told Rewire via Twitter direct message. “They’ve been my primary caregivers for the large majority of my life. As they age, though, they’re beginning to have health problems of their own, and I can only assume that trend will continue. Should Medicaid (an imperfect program to be sure, but my only hope for even partial coverage of in-home care) be gutted the way many Republicans want, I fear I won’t have any avenue for independent living when my parents can no longer care for me. In that case, my only option would be institutionalization, where neglect is common and abuse has historically been (and often continues to be) rampant.
“It’s a terrifying prospect that seems more and more likely with every new round of proposed legislation designed to cut supports for disabled folks,” said Whaley.
Though the ADA made HCBS a “priority,” it didn’t provide a mandate for state and federal agencies—just anti-discrimination language that made it clear people should ideally live in their communities. The lack of a firm directive allows many states to duck around what some disabled people see as a civil rights mandate: For those who would prefer to live in institutions, they should remain an option, but for those who do not, living in the community shouldn’t have to be a fight with state agencies for funding and support. In 1999, a U.S. Supreme Court case, Olmstead v L.C., reinforced the right to access community-based services. The justices found that forcing people into institutions against their will could be considered discrimination under the ADA’s stated preference for community-based living when possible. If someone’s needs can be accommodated in the community, they wish to leave institutions, and their care providers indicate that it’s suitable, disabled people must be housed in their communities, according to Olmstead.
In 2010, the subject was addressed again in the Affordable Care Act with the Community First Choice plan option, which offered additional funding to states interested in expanding supports to Medicaid beneficiaries. Such a funding change provided more money for states that opted in, to distribute to disabled residents who need help paying for aides, nurses, and other community-based services. Only a handful of states took advantage of the increased federal funding, highlighting the fact that deinstitutionalization still remains off the radar in many state governments. This is somewhat surprising for budget-conscious states, given the research on the cost of offering such services.
Three years later, the U.S. Senate’s Health, Education, Labor, and Pensions Committee found that the United States was not living up to the expectation that disabled people should be allowed to live in their communities, instead of languishing in institutions. The committee argued, as in Olmstead, that forcing people into institutions via policy is a form of discrimination.
This is where the DIA comes in. Initially introduced by Sen. Chuck Schumer (D-NY) in the previous congressional session, it would require states and insurance providers offering long-term support services to provide access to community-based living first, and to regularly make institutionalized people aware of their options. The bill bans the use of waiting lists, caps, and other barriers used to force people into institutions, and stipulates that governing structures would need to expand access to affordable and accessible housing to ensure that sufficient accommodation would be available to meet the needs of the disabled population.
This is a radical bill because it establishes a flat, clear mandate. Disabled people, the DIA argues, belong in their communities, and we should be concentrating resources to ensure that people can access the level of support they need to thrive. Like the ADA, the DIA could be enforced through lawsuits, whether from the U.S. attorney general (though should Sen. Jeff Sessions (R-AL) be confirmed, he might not pursue civil rights as aggressively as the Obama-era Department of Justice did) or individuals. But the clarity of direction under the DIA makes it much easier to pursue suits—there’s no longer as much ambiguity about whether entities are behaving in a discriminatory fashion.
While references to independent living made it into the Democratic Party platform in 2016, this isn’t entirely a Democratic bill. Rep. Christopher Gibson, who introduced the House version of the bill last session, is also from New York and a Republican. An additional House Republican, Rep. Jim Sensenbrenner (WI), has supported the bill, as has Sen. Bernie Sanders, an Independent who typically caucuses with the Democrats. It will need more robust bipartisan sponsorship to succeed, given the makeup of the incoming Congress, but notably, Republicans have been open to discussions about disability rights in the past—the ADA, after all, was signed into law by President George H. W. Bush. The only way for the DIA to forge a path ahead in the upcoming legislative sessions is for much more aggressive bipartisan outreach and cooperation, as Democrats cannot pass the bill without help, let alone succeed in an attempted veto override if it comes to that.
Before Congress adjourned, the Disability Integration Act spent its time languishing away in committee as advocacy groups lobbied lawmakers to sign on as co-sponsors. A new Congress will be convening on January 3, forcing the whole process to start over again. With a Republican majority in Congress and a less disability-friendly administration in the White House, it could very difficult to enact—particularly since the president-elect has indicated opposition to the DIA. Republicans are riding high on a perceived mandate from the public that includes decentralizing the provision of services and reducing government oversight, and a bill that appears to go against that legislative priority isn’t going to be popular.
It would, however, also be worth it. As of 2009, more than one million disabled people across the United States needed support services, whether delivered in their own homes, group-based settings, or institutions. With an aging population, the number of people who need long-term support services is only going to increase, and the nation should be ready.
Under President Obama, the federal government has hired more than 154,000 permanent and temporary employees with disabilities.
Watch the White House National Disability Employment Awareness Month Event Opening Session.
The White House hosted its final National Disability Employment Awareness Month event Thursday and celebrated the strides we have made to create a more inclusive federal workforce. I'm proud to announce important progress toward that effort.
In 2010, President Obama challenged the federal government to hire 100,000 people with disabilities within five years. Not only did we reach the goal between 2011 and 2015, we surpassed it. Since then, the federal government has hired more than 154,000 permanent and temporary employees with disabilities, and more than 109,000 of whom are permanent hires.
Thanks to the dedicated efforts of leadership, managers, and staff in agencies big and small to commit to inclusive recruitment, hiring, and retention practices, there are now more people with disabilities in the federal workforce than at any time in the past 35 years. This shows what government can do when agencies come together to make sure that everyone in our country has a fair shot -- not only to achieve their dreams, but to serve the country we all love.
Everyone benefits when our government reflects the full talents and diversity of the American people, so the fulfillment of the President's goals marks an important step forward.
With that said, it is just one step toward creating a truly inclusive workforce that represents the American people.
We must all continue to work together -- the federal government, and state and local governments, together with the private and not for profit sectors -- to ensure that the only limits to people’s success are the limits they place on themselves -- not an inaccessible job posting, discriminatory hiring practices, or a lack of workplace accommodations. We have a lot more work to do, so I challenge you to take a fresh look at all of your workplace’s practices and procedures and make sure they are inclusive of working families, people with criminal records who have earned second chances, and others who experience barriers to employment.
The kind of progress we want to see starts with us.
Senior Advisor and Assistant to the President for Intergovernmental Affairs and Public Engagement