This winter Broome Developmental Services (BDS)’s plan to build a group “home” for children with autism was in the news, as was STIC’s opposition to it. The plan is part of a pilot project being pushed by the NYS Office of Mental Retardation and Developmental Disabilities (OMRDD) to build 4 such facilities around the state—the first step toward a potential surge of small institutions as a response to the so-called “autism epidemic”.
BDS Director Carl Letson got the last word in the local paper with an article defending the plan. However, BDS withdrew its proposal to build the facility in the Town of Union, citing safety concerns on the land they had chosen—concerns they had not cared about until local residents pointed them out. Meanwhile, on March 31, several STIC staff had a telephone conference with OMRDD Commissioner Diana Jones-Ritter to try to persuade her to cancel the project and provide integrated alternatives instead. She refused.
The project is not a true product of local planning. It was dropped into the Broome County Community Services Board MRDD Subcommittee’s plan by BDS several years ago. Its original form—two 4-bed “transitional” facilities for young children with autism—had some general support. When it was changed to a single 8-bed permanent residence for anyone under 18 on the autism spectrum it lost that support, and at a recent meeting the subcommittee removed it from the plan. Still, BDS says they are looking at other locations and will build it anyway.
We know that Letson inherited this project from his predecessor and did not get much time to think about it before the issue blew up. We also know that Ritter inherited an OMRDD that had turned away from community integration under Tom Maul and the Pataki Administration, and she claims she’s headed in a new direction but needs time.
That claim is weak. The story begins with Commissioner Elin Howe, whose plan to close all of NY’s developmental centers and create new individualized integrated services was lauded by advocates almost 20 years ago. But powerful forces opposed her, and when she left to take care of her ailing husband, those forces won. Since then, demand for those services has grown rapidly but no Commissioner has put forward a credible plan to meet it. Ritter has said some of the right words but hasn’t ponied up the money. Her leadership of the state’s Most Integrated Setting Coordinating Council (MISCC), which exists to maximize truly integrated individual services for people with all disabilities, has not brought tangible results. The Office of Mental Health’s new plan to build its own bunch of group “homes” for kids—adolescents with eating disorders—is the latest example of the MISCC’s failure to carry out its mission. If Ritter is sincere, she may be struggling with the same entrenched anti-reform forces. But unlike Howe, she is out of time. After two decades of delays and empty rhetoric, change must come, and it must come now.
STIC is moving forward on several fronts to address this problem. One is community education. Letson’s published defense of the group “home” plan presented a very one-sided view of the issue. Here are the complete facts.
Letson said, “Broome DDSO provides a range of residential alternatives”. This is true. However, this range is biased toward segregation. Families of kids with developmental disabilities whose needs aren’t very complex or intense can usually get what they need to keep their minor children at home. But families whose children need more frequent or specialized services are told, “Sorry, we can’t do that in your own home; if you need that kind of stuff you’ll have to place your child in a group home.”
Letson quoted a parent who is satisfied with a group “home”. A parent who saw his article called us the next day to say that his efforts to keep his child at home without adequate support services broke up his first marriage and almost ended his second before he finally gave up and accepted the group “home” that the “experts” kept pushing him to take. We can also provide quotes from people who live, or have lived, in group “homes” and don’t like them. “Group home staff like to play head games with you and while you are expected to follow the rules, staff doesn’t.” “We aren’t allowed to see friends when we want to.” “We had no privacy anywhere in the house.”
But since parents seem to get more attention than actual people with disabilities, here are some quotes from two well-known parents of a child with autism: Connie and Harvey Lapin. They raised a son with autism in the 1960s and 70s, before many services that people take for granted existed. The Lapins helped get the first federal Developmental Disabilities Act passed, and they won a lawsuit in California to integrate children with disabilities in public schools. They helped found Jay Nolan Community Services, which used to run group homes. Here is what they say now: “Group homes were a tragic failure, even though that was our dream when we began to look at residential services. The word ‘community’ can be really deceiving. Located in the community does not necessarily mean a person is with or part of the community. We didn’t realize that individualized plans didn’t mean personalized plans. We concluded that a closed environment does not create natural friendships.” So Jay Nolan Community Services closed its group homes and moved all the residents into their own homes. The Lapins “advocated for Supported Living-assisting people with disabilities to live in their own home, no matter what the severity of their disability. This can include life-long supports, 24 hours a day, 7 days a week. We concluded that everyone is ready to participate in Supported Living.”
But this isn’t a contest about who can produce the most quotes and stories to support their side. This is about hard facts that demonstrate the fundamental unfairness of a system that makes it way too easy to segregate people while throwing roadblocks in the way of those who want their own homes and real and meaningful involvement in the community.
As Letson says, people do request “residential services” at very high rates, including at public hearings. However, “residential services” does not equal “group homes”—not for the Lapins, and not for most families of children with disabilities in our region. At the Broome County MR/DD Subcommittee’s 2007 Community Forum, for example, people who spoke identified 26 “residential service” needs that aren’t met locally. Of these, only nine were about group homes, and two of those were complaints about those facilities. People who came to this forum identified over 100 other needs and issues concerning integrated, individualized, non-congregate services for people with developmental disabilities that BDS does not adequately address. None involved group “homes”. The fact is, families that want their children to be in group “homes” are a tiny minority of families that seek residential services. Families who couldn’t get adequate in-home services, and accepted group “homes” as a last resort, are a much larger group. Families who want nothing to do with group “homes” whatsoever are the largest group of all.
Letson says 20 families wanted to get their children into this 8-bed facility. He did not mention many other much longer waiting lists for OMRDD-funded services that help families keep their minor children at home.
STIC offers a service called “Day Habilitation without Walls”. It is a critical part of an effective strategy to support families of children with autism, including those with behavior issues. It takes children out of the house for part of the day, giving parents a break, and provides intensive one-on-one support to teach them social skills and how to behave in real-life recreational and volunteer work activities in our community. We have a waiting list of 32 people who want this service; 20 of them are children with autism. For a long time, OMRDD froze funding for this program. New money is now available but we’ve been told that in order to demonstrate need, we must start serving the people on our waiting list, without payment. OMRDD will not commit to funding those services, even though we’re the only local provider that has a true one-on-one service model and, as a result, our services are in very high demand. STIC has lost about $300,000 due to the state’s fiscal crisis and we can’t afford to lose more. We aren’t going to take a foolhardy risk like providing services “on spec”. We also offer behavioral management consulting services to help families get evidence-based treatment for behavior issues. Local families requested this service for several years before OMRDD finally agreed to fund it, for a very small number of people. This program is critical to keeping minor children at home, and it, too, has a long waiting list.
This isn’t a plea for more money for STIC. Other local agencies that serve families can’t get enough funding either. For example, “residential habilitation” puts staff in the home to work with, train, and supervise a child, including helping carry out behavior treatment plans. Kids with autism and behavior issues need lots of this, but OMRDD pays such low rates that it’s hard to recruit and retain workers, or get enough service hours. We coordinate services for about 275 people with developmental disabilities, mostly children. Many can’t get all the “res hab” services that OMRDD agrees they need. The most commonly-requested services locally for two decades, respite and behavioral crisis services, could support overworked and stressed parents by providing an occasional break and bringing in extra help when things get especially difficult. This need has never been adequately addressed. Respite is severely rationed and nowhere near adequate. Recently, a proposed temporary crisis residence for children was denied funding and cancelled, and a temporary respite home has been delayed indefinitely. In our conference call, we asked Commissioner Ritter to respect local service plans and change the autism facility to a temporary respite facility. She refused.
OMRDD’s official cost estimate to keep one person in a group home for one year is $150,000. BDS’s “range of alternatives” is very well-funded at the segregated facility end, while in-home non-congregate services—the services that most people want—go begging for money even though the per-unit service costs are lower.
During the worst fiscal crisis since the Great Depression, OMRDD has budgeted about $6.88 million dollars to serve just 32 children with autism in its pilot project’s four group “homes” in the next fiscal year, not including what it will cost to buy land and build the facilities. During that same period, it plans to spend only $7 million on in-home and non-congregate services requested by 4,200 families. That’s $150,000 per child per year for families who accept a group “home”, vs $3,150 for each child whose family is struggling to keep them at home. Where is the fairness in that?
A true “range of alternatives” would be one that provides the same level and quality of support services to a person, based on their individual needs, no matter where they live. We already know how to do this.
Based on current rates and costs, we estimate that OMRDD could fund 56 hours of a mix of in-home and non-congregate out-of-home services for each of these children at an average of $72,000 a year. The kids will be in school during the day, including a summer program for students with developmental disabilities. That provides 13 hours on Saturday and Sunday, and 6 hours Monday through Friday, when they aren’t in school. Some children may also need overnight service (wandering at night can be an issue). If we add another 8 hours per day the cost would be $129,000 per year. That is still $21,000 less than the OMRDD estimated average annual cost to keep someone in a group “home”. And not every child needs that much service.
OMRDD says the “proposed home is part of a program to develop state of the art residences for treating adolescents, young adults and other adults with autism”. However, the project is far from “state of the art”. The Lapins’ experience isn’t exceptional. All over the country, families and developmental disabilities experts have concluded that group facilities are not the way to go. The state of Ohio no longer creates new group “homes”. Vermont is gradually winding down its group “home” program. In NY, Syracuse's Onondaga Community Living closed its group “homes” years ago and serves people with very significant needs in their own homes. OMRDD’s own best-practice guidelines call for facilities with no more than four residents.
The claim that because the proposed 2200 sq. ft. facility has two wings with four bedrooms each, and a common kitchen, it isn’t really a crowded 8-bed group “home” is absurd. One of the most basic truths in behavioral treatment is that it is harmful to group people with behavior issues together. They respond to each other’s agitation and mimic each other’s behaviors. There is good scientific evidence that loud noises and close physical contact with others trigger behavior problems among children with autism. The environment of this proposed facility will be crowded, loud, and chaotic. It will cause the very problems that OMRDD claims it will “treat”.
OMRDD disputes our claim that “Applied Behavioral Analysis” (ABA) is controversial. We were trying to keep a technical subject simple. ABA (sometimes also called “Applied Behavioral Intervention” or “ABI”) is an umbrella term. It includes various approaches including “Discrete Trial Teaching” and “Positive Behavioral Support”, among others. Endorsements of ABA by government health agencies like those Letson mentioned in his article do not necessarily extend to all of the methods that ABA includes. Positive Behavioral Support is specifically endorsed by the US Department of Education and its use is required by the federal Individuals with Disabilities Education Act.
However, the methodology used by the Institute for Child Development (ICD) and which will be used in the proposed facility is Discrete Trial Teaching. Proponents of this method cite a 1987 study (the so-called “Lovaas” study) that showed a 47% success rate in improving the behavior of people with autism. However, that study has serious flaws. In 1999, the New York State Department of Health reviewed over 230 studies of ABA methods to see if they met minimum research quality standards. It found only 4 that met those standards, and the Lovaas study was not one of them. In 2000 a study that attempted to duplicate the Lovaas results while eliminating its flaws showed only a 13% success rate for the treatment that will be used in this group “home”.
In fact, a review of the research on various ABA methodologies shows that convincing results are lacking for all of them. A 2006 study noted, “... it is not completely clear how effective different types of behavioral interventions are for children with autism...” The Journal of Pediatrics has reported on a study that will soon be published that shows that “Currently there is inadequate evidence that ABI has better outcomes than standard care for children with autism.” A research journal, Scientific Review of Mental Health Practice, has opined that “Given the current state of the science, claims of ‘cure’ and ‘recovery’ from autism produced by ABA are misleading and irresponsible.” At best, current research indicates that no particular method is effective for more than 20% of people with autism, and ICD’s Lovaas-style method has been shown to be ineffective for adolescents like those targeted for the OMRDD project.
STIC is fortunate to have available an internationally renowned behavioral psychologist, Dr. Tim Feeney, who runs our statewide TBI Neurobehavioral Project. That project uses the Positive Behavioral Support model to create individualized services to enable people with multiple disabilities—brain injury, substance abuse, and mental health disabilities—and really, really tough behavior problems—to live independent and productive lives in their own homes and communities. In our call with Commissioner Ritter we offered Dr. Feeney’s services to the families whose children are slated for the autism group “homes”. We said, “Give the families a chance to hear about an alternative that will let them keep their children at home.” Ritter refused. Up to that point in the conversation, she had insisted that we were trying to deny “choices” to families by opposing group “homes”. But when we offered this choice—a real choice to avoid sending their children away—she said she didn’t want to “confuse” families with “too many options”.
STIC will offer the choice anyway, by a different route. Dr. Feeney will speak at STIC on June 25 on “Positive Behavior Supports and Autism”.
Science aside, the behavior problems that some children with autism experience can be horrific, and families can be profoundly disturbed, and even broken up, by the struggle to deal with them. STIC works with some of these families. We have great empathy for them. Some families swear by Discrete Trial Teaching. At least as many others say their kids have been harmed by it. These families know what they know. They have a right to state their preferences, and to have them respected within reasonable bounds of fairness.
But children do not remain children forever. The opinions of adults with autism who underwent this treatment as children should get at least equal respect. As one such person put it in an article entitled, “Everything I Needed to Know about Life I Learned from My Behavioral Therapist”: “Don’t stare out the window in rapt amazement at the fluttering of leaves on a tree or at the formation of a cloud. It isn’t allowed. What is allowed is learning to put a lid on a box, 90 times a day, until you get it ‘right’. Always hug when told to hug. Always kiss when told to kiss. Act like a dog, but never say you are a dog. Act like a robot, but never say you are a robot. Only say what other people want to hear.”
OMRDD does not respect everyone’s preferences equally. It spends the vast bulk of its resources catering to a tiny minority that asks for, or can be made to accept, segregated programs like group “homes”. By contrast, it allocates a pittance to services that the majority of people want—services that help families keep their minor children in their own homes, and that will enable those children, when they become adults, to live with dignity, independence, and productivity in homes and apartments of their own, with a significant other, one or two chosen friends, or no one else at all, as they prefer.
This institutional bias is part of a larger pattern in NY, where an administration that pays lip service to disability rights and community integration fights lawsuits challenging its use of huge adult “homes” and developmental centers while rolling out plans to build more segregated residential facilities for children with developmental and mental health disabilities and to make nursing facilities “more homelike”. It is growing harder to avoid the conclusion that the powerful forces that enacted what good-government advocate Blair Horner called “New York’s ‘iron law of institutions’”—public employee unions, corporate health providers, and operators of nursing facilities and other residential institutions—are the only constituency the Paterson Administration really responds to.
However, Commissioner Ritter will get another chance to prove us wrong. OMRDD is holding hearings around the state on its current 5-year plan. By the time you read this, most of them will be over—including one in Binghamton on June 15. At press time, OMRDD was screening people who asked to speak, to ensure a “range” of views. It sounds to us like they are rigging the hearings to prevent an overwhelming public outpouring of complaints about segregation. We’ll let you know what happens.
EDITOR: KEN DIBBLE
LAYOUT: JESSE BISHOP
135 East Frederick St.
Binghamton, NY 13904
News & ANALYSIS
Big Budget Blues
Although the final NY 2009-2010 budget did not hit people with disabilities as hard as it might have, largely because of the federal economic stimulus package, serious damage has been done.
Most significant are cuts to attendant services. Between a retroactive cut to the 2008 trend factor and a zero trend factor for this fiscal year, agencies that provide attendant services, including STIC’s Consumer Directed Personal Assistance program, will see big losses. The “trend factor” is like a cost-of-living increase, but it’s not cumulative. It’s a percentage that gets added on to the base rate each year. For example, if your base rate is $10.00 and the trend factor is 3%, then you get $10 plus 3% of $10 (or $10.30). If the trend factor for the new year is 0, that doesn’t mean you don’t get another 3% (of $10.30) this year, it means the 3% you were getting is gone, and you’re back to $10.00. So a trend factor of 0 doesn’t mean we didn’t get an increase, it means we were cut. Reducing the trend factor for 2008 means we have to pay back money we’ve already spent, by deducting it from this year’s payments. This will cost STIC around $300,000 this year. As a result, we’ve cut wages and benefits for all STICsters, and eliminated a half-time position.
What this means for people with disabilities is that the recruitment and retention problem for personal attendants will get worse. Many people already can’t get all the service hours they need and have been allocated. Reducing attendant wages and benefits makes it harder to find people to do that work. We’ve tried to cushion the blow by applying smaller cuts to all STIC staff instead of deep cuts to attendants only, but it’s still going to hurt people.
Here’s the rest of the bad news:
Premiums for Family Health Plus will go up: Monthly premiums for families with incomes between 251% and 300% of poverty will go from $20 to $30. Families between 351% and 400% will pay $60 premiums, up from $40. These increases are lower than what Paterson wanted, however. Also, Paterson’s proposed Medicaid Buy-In premium increase was not approved.
NY’s Medicaid program will limit duration, frequency, and dosage, and begin requiring “step therapy”, for some medications. In “step therapy” you must try a preferred drug first and have it fail before you can use a more expensive drug. This will play havoc with many people’s health. However, Paterson’s plans to add anti-depressants to the Preferred Drug List, to eliminate the “physician final say” provision on what drugs will be paid for, and to end the Medicare Part D “wrap-around” program for EPIC and low-income Medicaid recipients, did not pass.
The Access to Home program, which provides home modifications to people with disabilities who aren’t eligible for that service from other sources, got no money in the current budget. The program has $4 million remaining from last year’s budget that it will continue to use, though.
There were also some bright spots.
The following Paterson proposals did not pass: cutting the state’s share of SSI payments to people with disabilities; a 1% cut in funding for mental health programs; delaying and weakening the law requiring appropriate services for prisoners with mental illness (the “SHU bill”).
Funding was increased for supported housing, and for peer-run support services, for people with mental health disabilities.
The asset test was eliminated when determining eligibility for adults for Medicaid except for SSI recipients; the face-to-face application and fingerprinting requirements were dropped for all categories of Medicaid.
A potentially big win was a law requiring all NY counties to set targets for enrolling people in the Consumer Directed Personal Assistance (CDPA) program. This program lets people with disabilities hire, schedule, train, supervise, and fire their own personal attendants (see CDPAP - FAQ). It has the lowest rate of any Medicaid-funded attendant program in NY, and lower turnover and higher customer satisfaction rates as well. Previous law requiring every county to make CDPA available was not enforced, and the program isn’t offered, or is available on a very limited basis, in many counties. Advocates argued that boosting CDPA enrollment would cut overall attendant service costs, and won. Counties must report their progress annually to DOH. $500,000 was budgeted to promote CDPA, including contracts for consumer-directed programs to conduct outreach and train discharge planners, DSS staff, and medical providers about the program.
The effects of this law will likely be diluted by the CDPA rate cuts. And, of course, the measure is only as good as its enforcement system. Advocates remain concerned that DOH does not take the program seriously and favors large corporate “traditional” homecare providers (see UHF Channels for Long-Term Care).
Congress Gets a CLASS Act
On March 25, Senator Edward Kennedy (D-MA) and Representatives Frank Pallone (D-NJ) and John Dingell (D-MI) re-introduced the Community Living Assistance Services and Supports (CLASS) Act (S. 697 and HR 1721). The bill would create a new national insurance program for adults who need long-term services and supports if they become functionally disabled, while providing them the opportunity to continue to live, work and participate in their communities.
The CLASS Act is supported by almost 100 national groups.
Ten million Americans currently need long-term services and supports, a number expected to reach nearly 15 million by 2020. The cost of most private-sector disability or long-term care insurance plans is far from affordable, and neither Supplemental Security Insurance (SSI) nor the Old Age, Survivors and Disability Insurance (OASDI) program considers the extent and character of a disability in calculating benefits. Thus, most Americans who have or develop severe functional impairments must rely on Medicaid for services critical to their independence (such as housing modifications, assistive technology, transportation and personal assistance services). But Medicaid eligibility rules that limit income and resources create a strong incentive for people who need long-term services to spend down assets and remain poor and unemployed. Because Medicaid pays at least 50% of the cost of services, this huge increase in long-term care recipients will add $44 billion annually to the program’s cost over the next decade.
The bills have been referred to the Senate Finance and House Energy and Commerce Committees. More information is at www.passtheclassact.org.
DAI v OMRDD
Albany Law School (ALS) and Disability Advocates, Inc. (DAI) get federal funds to provide civil rights advocacy and legal services to people with developmental disabilities through a contract with the NYS Commission on Quality of Care and Office of Advocate for People with Disabilities (CQC) under the federal Protection and Advocacy for Persons with Developmental Disabilities program (PADD).
In 2004 these agencies began looking into complaints that young people in OMRDD developmental centers in the Albany and Hudson Valley regions were being denied appropriate education services. Later they also heard that some residents who could live in more integrated environments in the community weren’t getting assistance and support to move out. As time passed, the agencies concluded there was a pattern of civil rights violations in these facilities—particularly of the right to get services in the most integrated setting—and they sought broader access to information about what was going on there. Eventually they asked for the records of every person living in the facilities who did not have capacity to consent or a legal guardian.
OMRDD refused to provide all of this information and DAI and ALS sued.
These are about the only facts on which the parties agree. The case has yet to go before a judge. The circumstances surrounding it and the issues raised are of interest both locally and statewide.
The legal argument concerns whether ALS and DAI have authority to request a large number of personal records under NY or federal law. Federal law lets PADD contractors obtain records for individuals if a specific complaint is made concerning them or the agency has “probable cause” to suspect they are abused or neglected. “Neglect” is defined to include not providing services in the most integrated setting. However, it provides exceptions for people whose records are sought who are consenting adults and refuse to provide them, who are minors and the parents refuse, or who are adults but lack the ability to consent and a guardian or other “legal representative” refuses consent. In the 1980s NY enacted legislation that grants PADD contractors access to records of people living in OMRDD facilities without mentioning consent, to enable operation of the PADD program as “provided” in federal law.
ALS and DAI say the NY law gives them blanket access to the records. They also cite federal case law that grants PADD final authority as “arbiters” of “probable cause”, which is defined more broadly in these cases than in criminal law. All parties agree that CQC has broad powers to review records under state law. OMRDD claims that the “provided in federal law” phrase in the state law means the state legislature simply intended to authorize CQC’s use of subcontractors to carry out the PADD program under federal regulations and not to extend the CQC’s broad powers to those subcontractors.
The plaintiffs and OMRDD don’t agree on whether any adults in these facilities today lack capacity to consent; OMRDD claims all the adults are there “voluntarily” and can leave at any time. However, to the extent that their request covers any “incompetent” adults, ALS and DAI argue that even if the federal consent exceptions apply, OMRDD is still unlawfully refusing to turn over records for adults who lack capacity to consent and have no guardians or legal representatives. OMRDD says that as a matter of NY regulation, policy, and practice, “involved family members” can be construed as “legal representatives” with the right to consent to or deny the release of records. ALS and DAI argue that the plain language of the federal law specifically excludes those family members if they have not been formally appointed as legal guardians empowered to make “all” decisions for the person.
The plaintiffs’ argument that they have broad authority to seek records under NYS law seems weak, but they have a strong case that federal law both gives them the authority to determine “probable cause” and severely limits the definition of who is a “legal representative” with the right to consent to or deny release of records. These points will eventually be decided by a judge.
OMRDD is spinning the issue as a fishing expedition by “activists” trying to get sensitive private information about people with disabilities to show that OMRDD is violating the Supreme Court’s Olmstead decision, which says the ADA requires states to provide services to people with disabilities in the most integrated setting. As allies they have enlisted the CQC, which says it doesn’t agree with its subcontractors’ interpretation of the law, Parent-to-Parent, a respected parent advocacy group that typically supports a progressive view of disability rights, and the Self Advocacy Association of NYS (SAANYS), a not-for-profit agency funded by OMRDD that claims to speak for people with developmental disabilities.
Why on earth, all of these organizations say, would we want to allow some meddling lawyers to get information about the disabilities, behavior, and even “bowel movements” of people which they themselves, or their loving families, should have the right to keep private?
Well first, the assumption that all families of people with disabilities truly have the best interests of those people at heart cannot be proven. History and the criminal courts are full of examples of family members abusing and neglecting adults with disabilities, including forced sterilization, sexual slavery, and misappropriating funds intended for their support. This is why NY and other states have made it harder for people to get formal guardianship status for adults with disabilities. Actually, the law doesn’t go far enough. We at STIC have seen family members collude with medical providers, facility operators, and lawyers to abuse, neglect, or deny civil rights to their relatives with disabilities in ways that are ugly but don’t violate the law.
More commonly, family members can oppose greater independence for relatives with disabilities and just be wrong. In America, adults make their own decisions unless an objective third party finds, according to legal rules of evidence, that they are incapable of doing so. We don’t think any family member who truly cares about their relatives would argue with that. We are troubled by people who want veto power over investigations of how their relatives are being treated.
Let’s remember, we’re talking about investigating what is going on with people who spend most of their time not with their families, but inside the walls of segregated facilities, out of sight of people whose only job is to protect their rights. As Jonathan Carey’s story indicates, even the most involved of families can’t prevent institutions from neglecting, abusing, or even killing their relatives. (see AccessAbility Fall 2008) The DAI complaint cites Willowbrook and the Carey cases (both at the Anderson School in the Taconic DDSO, and at O.D. Heck Developmental Center in the Capital District DDSO-the two DDSOs named in the suit) as examples of why PADD subcontractors exist and need authority to investigate patterns of abuse and neglect.
OMRDD’s response was that they were shocked, just shocked, that they would even bring this up. After all, it’s 2009 and the events involving Carey happened between two and four years ago. Since then OMRDD got a new Commissioner who has ordered all the DDSOs to have a formal “community placement process” (CPP) for moving people from “institutional settings” into “community settings”. They say lots of people have moved out of the O.D. Heck and Taconic facilities as a result of the CPP. So really, nothing happened in those places that ALS and DAI should be worried about, and even if it did, it stopped happening at least two years ago.
The problem is, some OMRDD DDSOs have a poor record of following orders from the Central Office. There is no evidence that things are any different today than they were years ago when DDSOs were “ordered” to offer a free choice of all available service coordinators to people on the HCBS waiver, to give people realistic options for supports to enable them to live in their own homes, and to stop building group homes with more than 4 beds, but did not comply.
DAI wants evidence, not unsubstantiated claims, that things have changed. DAI says OMRDD has not provided an acceptable copy of its CPP (OMRDD says they provided a “PowerPoint”; that is, a bulleted list, not a policy or procedure manual). We at STIC requested a copy of this procedure several months ago from Broome Developmental Services, which they have yet to provide. Although OMRDD claims that the CPP ensures that each person in a developmental center has a plan for discharge and is either on the path to moving or receiving services to make them “ready” to move, we at STIC have evidence to the contrary.
OMRDD told the court it “takes time” to move people from “institutional” to “community” settings because new buildings must be built or renovated and groups of people chosen to live in them. OMRDD’s idea of moving from an institution into the community is to go from a closed facility with a few hundred beds to a closed facility with 6, 8 or 12 beds. They claim that group “homes” are integrated “community-based” settings in defiance of obvious fact. Although their regulations state that people seeking residential services can choose where to get them, including in their own homes, their planning process envisions only one choice: group “homes”. In the Broome DDSO, people who want to leave the developmental center but don’t want a group “home” are resisted. If they’re voluntary, they’re told they can leave if they want but they’ll get no help from OMRDD.
Then there’s the CQC, which filed an affidavit in support of OMRDD. The CQC was cited by the NYS Inspector General for failing to investigate the first Jonathan Carey case, in part because the agency failed to recognize that it has a responsibility to operate as an independent watchdog of OMRDD’s activities. CQC has gotten a new commissioner too, of course.
We’ve talked to both of these new Commissioners. The new CQC Commissioner, Jane Lynch, didn’t seem to grasp the implications of the Inspector General’s report, or why the CQC’s reputation has deteriorated from that of a fierce if somewhat overprotective advocate for the health and safety of people with mental and developmental disabilities to that of an unresponsive defender of the status quo at OMRDD and OMH. And the new OMRDD Commissioner, Diana Jones-Ritter, told us she’d love to live in one of her agency’s group homes—indicating a mind-boggling lack of awareness of the reality of the daily lives of the people OMRDD oversees.
This is not a system that engenders trust. OMRDD spouts platitudes about “community integration” and “valued lives” but jealously guards its control over the people it exists to serve, and its ability to provide well-paid jobs for unionized workers in settings designed primarily for their convenience. This system, along with OMH and DOH, is circling its wagons to resist effective legal efforts to induce real reform. This system needs monitoring by agencies like ALS and DAI. And those agencies need the support of people with disabilities and families who care about quality of life and civil rights.
Drop that Wait!
Bills have been introduced in the House and Senate (S. 700 and H.R. 1708) to end the two-year waiting period for people on SSDI to receive health care through Medicare. Unlike those who qualify for Medicare based on age or certain life-threatening illnesses, SSDI beneficiaries currently face a 24-month wait to get Medicare coverage. The Ending the Medicare Disability Waiting Period Act of 2009, sponsored by Senator Jeff Bingaman (D-NM) and Representative Gene Green (D-TX) would phase out the discriminatory waiting period by January 1, 2014.
Many groups support the legislation and are calling for SSDI beneficiaries to get the same immediate Medicare coverage as other eligible individuals: people over 65 and those who fall within the exception because of illnesses such as end-stage renal disease or ALS.
The legislation has been referred to the Senate Finance and House Ways and Means Committees.
Obama on the Run from ADAPT
In late April disability activists, citing a “betrayal” by the Obama Administration, staged three days of protests in Washington, DC to support the Community Choice Act. Almost 200 people were arrested as they chained themselves to the White House fence or crawled up the Capitol steps.
The Community Choice Act (CCA) is the successor to MiCASSA, a bill first proposed by disability activists in the mid-`90s to end Medicaid’s institutional bias. Although MiCASSA never had serious backing in Congress or from the Clinton or Bush Administrations, Barack Obama campaigned on his support for the CCA in the disability community.
The CCA would allow people who are eligible for Medicaid and for nursing facilities, ICFs, or mental institutions to have the Medicaid funds that would have been spent to keep them in those facilities instead used for services in their own homes and community activities. People would have the option of hiring, training, supervising, and firing their own attendants or following a traditional agency provider model. Services could include instruction and supervision, housekeeping, personal care, and simple medical procedures such as catheterization, as well as transition assistance and cash subsidies to assist people to move from institutional settings to their own homes. Eligibility and hours of service would be determined by functional needs assessment, not age or diagnosis. This would be a Medicaid “entitlement”, without waiting lists.
This may sound familiar. Many states already provide pieces of this service; NY provides more than most. But even in NY, people with developmental disabilities can’t get many of these services consistently or control their own services, and people with mental health disabilities can’t get them at all. CCA would be a major advance for New Yorkers with disabilities.
After Obama’s election, ADAPT and other activists made strides in gaining congressional support for CCA, and they assumed Obama would sign the bill, since his website specifically promoted it. However, suddenly this spring, as Congress began serious work on health care, the bill was dropped. Activists were told that Obama would not take the lead on CCA and they should seek help in Congress. Congressional leaders said “we can’t do everything at once” and expanding health insurance coverage was the priority. Meanwhile, mention of CCA was quietly removed from Obama’s website.
It’s plausible that not all aspects of health care reform can be enacted at once. However, there was a lot of enthusiasm for CCA in Congress that suddenly, mysteriously, dried up. The key may be David Axelrod, Senior Advisor to President Obama.
Axelrod’s daughter lives in a private institution in Illinois called Misericordia. Misericordia, Axelrod has said, was “a godsend for my daughter and its 550 other residents. Yet, it is defined as an ‘institution,’ and, as such, has been targeted for closure by well-meaning but misguided advocates who insist that group homes in the community are the only acceptable option for people with disabilities.” Although Misericordia was not in fact targeted for closure by Illinois activists, who were focused on closing state institutions (and most disability activists do not favor group homes), Misericordia has allied itself with nursing facilities and other institutions in IL to oppose legislation to implement the Olmstead decision, and tried to intervene in an Olmstead lawsuit there. Misericordia’s operators clearly fear that if people with disabilities get a real choice about where to live, they will not choose institutions. Perhaps Axelrod is afraid too.
Other Voices on Long-Term Care
As the Obama Administration dropped the ball on long-term care reform and the Paterson Administration followed the standard NYS pattern of protecting powerful institutions and hacking funding for cost-effective integrated services, other groups were offering systematic analyses of our long-term care system and ideas for its improvement. Some of these analyses are better than others, but none of them gets everything right.
The United Hospital Fund’s report (see UHF Channels for Long-Term Care) is incomplete in its data and largely self-serving on behalf of its constituents, large corporate health care providers.
The Long Term Community Care Coalition (LTCCC)’s white paper, Developing a New and Better Long Term Care System in NY State, takes a more balanced and holistic view. It acknowledges that people with disabilities, including elderly people and those with mental health disabilities, do not want to live in congregate facilities. It emphasizes consumer-control and decision-making when planning services. It also notes the importance of affordable housing, not coupled to services, for enabling people with disabilities to remain in the community.
However, the LTCCC is defensive about the efforts of the NY Commission on Health Care Facilities in the 21st. Century to downsize and close institutions. It dislikes the Commission’s ability, under state law, to force up-or-down votes on its recommendations in the Legislature, and urges that instead all the “stakeholders” be permitted to take part in the decision-making. That’s already been tried, though. When “stakeholders” who are facility operators are involved in the decisions, no facilities get closed—and facilities need to be closed. The only truly medically necessary uses for nursing facilities in the modern age are short-term post-acute rehab and hospice services. Nearly all of these facilities should be closed and their residents should receive support in their own homes. The Commission, despite its mandate, is still hamstrung by provider politics and hasn’t gone nearly far enough. It recommended very few true closures of nursing facilities; most of its proposals called for converting those facilities to assisted living.
The LTCCC, like the UHF, is also enamored of managed long-term care for some reason, and makes some of the same assumptions that UHF does about the needs of people with disabilities for “case management”. Lots of people with disabilities are doing just fine with their current attendant services and do not need, or want, intrusion by “case managers” into their lives.
The LTCCC report laudably points out that “some adult homes” (most of which serve people with mental health disabilities) are not “homes” but institutions, and should not be called “community-based care”, but it ignores the regimented institutional nature of all group “homes” of whatever size, and does not address the needs of people with developmental disabilities at all.
Our friends at the Center for Disability Rights (CDR) in Rochester (a Center for Independent Living like STIC) have released a very important series of papers on long-term care issues. On many points, including support of the federal Community Choice Act (CCA), consumer control, the need for affordable, accessible housing unbundled from services, and the need for a single-point-of-entry that is not controlled by providers or county governments, CDR has the right stuff.
However, their focus is largely on short-term measures to get as many people with physical disabilities out of nursing facilities and into their own homes as possible, as fast as possible. What’s missing is a long-term policy vision in tandem with short-term measures. We can only meet growing demand for integrated individual services by reducing unit costs—and that means drastically simplifying and consolidating the state’s disability service systems. CDR has understandable concerns about unpredictable effects of major changes to the system. But we think the only way to get a much better system is to have a much simpler system, with fewer moving parts that don’t mesh together well. Substantial structural reform can be combined with strong maintenance-of-effort-and-eligibility requirements to transform the system safely.
Long-term care is an economic and political juggernaut that is bearing down upon us more quickly with each passing day of the Baby Boomers’ “Golden Years”. The current system is unsustainable and so it will change. The change could be a catastrophic collapse that leads to homecare for the well-off and “self-directing” few, deregulated “assisted living” institutions for the many who have fewer resources and friends, and the shadow of legalized euthanasia for the rest. Or we can thoughtfully engineer comprehensive systems change to bring a better quality of life to people with all disabilities of all ages.
This year’s state budget fight has two parts. Part One was getting more cuts to address a deficit in the current fiscal year, 2008-09. That fight is over; the 08-09 budget was cut by about $1.6 billion in January. Part Two is the battle to cover the projected $14 billion deficit for 2009-10.
Current Year Cuts
FY 08-09 saw four budget-cutting frenzies. The first was when the budget originally passed. At that time state funds for Centers for Independent Living (CILs) like Southern Tier Independence Center were cut by 2%, as were most other things. Then came Governor Paterson’s executive order to cut state agency spending, which caused a hiring freeze. This saved around $1 billion. The third cut, the state Legislature’s August special session, reduced some Medicaid cost-of-living (COLA) increases, various disability-related program allocations, and CIL funding again (this time by $484,000), for a total reduction of well over $400 million. Paterson wanted more cuts from the Legislature in November but they balked. However, by January it was clear that something had to be done. The disability community dodged most of that bullet; there were only two significant items:
COLA increases for “home care programs” were fully canceled. We aren’t sure if that applies to all Medicaid State Plan attendant programs (including Personal Care and CDPA) or just the Certified Home Health Aide program. They were also canceled for hospitals and nursing homes.
The “Bridges to Health” program, a joint NYS Office of Children and Family Services and DOH Medicaid Home and Community-Based Services (HCBS) waiver for children with disabilities living in foster homes, was delayed. Integrated supports for more kids is a good idea, and some disability advocates applaud Bridges to Health, but STIC has criticized the program. It seems to us that most of the children affected should already be eligible for other waivers; the fact that they don’t get the services seems more like an interagency turf issue than an actual service gap. We’ve also criticized NY’s piecemeal approach to filling service gaps; all of the HCBS waivers should be combined into one program under a single administration, with eligibility based on functional need rather than age and/or diagnosis. We hope this delay will give our leaders, especially in the Most Integrated Setting Coordinating Council, time to consider a more truly efficient and effective approach to expanding community-based services.
Most of the $1.6 billion in savings enacted in January came from re-arranging existing agency budgets; they took unspent money off the books of some agencies and applied it to deficits in other areas. Some additional revenue was raised by new taxes on insurance companies and by increasing SUNY tuitions. Some Legislative Member Items were cancelled, and new programs enacted this year were cut by 20% of the remaining unspent funds. Finally, an order by Paterson in October to hold all new agency contracts and capital spending “for review” was factored in.
Paterson also claims that the January agreement cut the projected 09-10 deficit by about $800 million. However, as he has said, the deficit is a “moving target” tied to the performance of the economy and especially of Wall Street.
STIC gets its funds from many state sources; we were hurt not only by the Independent Living cuts but by Medicaid COLA eliminations and the capital spending halt (we had included some new-building renovation costs in some of our contract budgets; those funds were withheld). The impact so far has been that we have cut our staff by approximately 1.5 full-time positions.
Fiscal Year 2009 - 10
Governor Paterson not only proposed big cuts in December for 09-10; he also called for a long list of new “sin” and “luxury” taxes. In February, President Obama signed a massive federal “stimulus” bill into law (see Keeping Us Stimulated). Since then, the struggle has been over how much of that law’s aid to NY should be applied to the deficit. That’s very much up in the air, so we won’t describe most of Paterson’s proposals in detail here, but some items do merit closer attention.
Paterson wants to cut Medicaid spending by about $3.2 billion as follows: defer one week of salaries and eliminate pay raises for state employees; cancel or cut COLAs again and/or change reimbursement formulas and/or cut rates for hospitals, nursing homes and all State Plan personal assistance services; convert 6000 high-cost nursing facility beds to lower-cost, but still segregated, “assisted living” beds; create “regional assessment centers” to set eligibility for all State Plan personal assistance, nursing facility, and assisted living services; tax Certified Home Health Care agencies and Long Term Home Health Care waiver service providers; cut Medicaid drug coverage by putting a limited set of anti-depressant drugs on a “preferred list”, requiring “step therapies”, dropping the “physician final say” rule in drug coverage disputes, requiring more frequent prescription re-authorizations, and reducing EPIC drug coverage; increase Child Health Plus and Medicaid Buy-In premiums; charge premiums to Early Intervention Program users; force more people into managed care (including some who are now “exempt” or “excluded”, via “demonstration programs”); and include personal care in managed care plans.
The “regional assessment centers” are interesting. If done right, they could end NY’s problem of uneven availability of integrated community-based supports for people with disabilities by taking control away from county governments. But the current proposal duplicates some functions already handled by the county-based NY Connects point-of-entry system, and the Regional Resource Development Centers (RRDCs) for the Traumatic Brain Injury and Nursing Facility Transition and Diversion Medicaid waivers. Instead, the state should merge the existing TBI and NFTD RRDCs, and increase their funding so they can both carry out the NY Connects mission and run the new assessment centers. Eligibility determination for all of NY’s HCBS waivers, not just the TBI and NFTD programs, should be part of the expanded RRDC role.
Paterson also wants to cut NY’s share of SSI benefits. SSI subsidizes people with disabilities at the lowest income levels. The money is mostly federal, but most states, including NY, add a share. The current federal amount is $674 for individuals, $1,011 for couples. NY adds $87 for individuals, $104 for couples, $23 for individuals living with others, and $46 for couples living with others. NY’s share has not changed in 20 years. The average NY SSI recipient’s income is 80% of the federal poverty level. Paterson wants to cut each state share amount by between $15 and $30 for June through December 2009, and then raise them a little bit, but not back to current levels, next January. These cuts only affect people living in the community; they don’t apply to people in segregated congregate facilities, which skim off most the payments to cover their costs.
Paterson wants to put off implementing the “SHU bill” until 2014, three years after its current effective date of 2011. This law was passed last year to make state prisons provide appropriate treatment services to prisoners with serious mental illness instead of putting them in “special housing units” (SHUs)—solitary confinement—in response to their disability-related behavior. He also wants to cut the number of prisoners to whom the law would apply in half.
Not everything proposed is a cut. Paterson wants to extend Family Health Plus eligibility for adults to families living at 200% of the poverty level, to public employees, and to young adults aged 19 and 20 who aren’t living with their parents. He wants to drop face-to-face interview, fingerprinting. and asset-test requirements for Medicaid eligibility, but only for “general” Medicaid, not “full” or long-term care Medicaid, which is what most Medicaid-eligible people with disabilities get. He also wants to increase public assistance (“welfare”) support payments.
He also wants to impose new taxes (so-called “assessments”) on insurance companies to pay for government health insurance programs; enact “sin” taxes such as a tax on soft drinks that contain sugar, and on tobacco products; and add or increase various specialty fees.
Paterson says the recession will last for years and the budget deficit is structural; so while we should use federal stimulus money where it will actually protect or stimulate jobs and economic growth, we must also reform Medicaid spending to ensure a sustainable future. Some of his “cuts” are actually diversions of Medicaid funds away from more expensive segregated and in-patient programs to less-costly integrated and outpatient services. Many health industry and union lobbyists, disability advocates, and members of the Legislature want the federal money to be used to restore virtually all of the proposed cuts, and some want to rescind the new taxes.
Details on the stimulus bill are fairly scarce, but it could probably cover about 70% of the state’s budget deficit in FYs 09-10 and 10-11. That leaves some $4 billion to make up in each of those years. And Paterson is right: the recession will last beyond March 31, 2011, and NY spends more than it should on many things, including Medicaid long-term care on a per-capita basis.
Paterson also claims that everyone is asked to share the pain of his budget proposals. But his budget does not distribute suffering evenly, and many items maintain or increase the long-term care system’s institutional bias. It is unfair to raise welfare payments for nondisabled poor people and protect rich people from tax increases while cutting SSI benefits for the poorest people with disabilities. The SSI cut’s uneven application, to people living in the community but not those in segregated facilities, is disturbing. Many of the rate changes and cuts for long-term care fall more heavily on community-based services. It is counter-productive to get relatively small cost savings by converting segregated nursing facility beds to still-segregated “assisted living” beds, when much greater savings and progress on integration could be gained by closing those places and using the funds to expand personal assistance services. Rather than risking the health of people with disabilities with enrollment targets for managed care programs that historically neither save money nor provide adequate care, we should set enrollment targets for Consumer Directed Personal Assistance services in every county in the state.
Although disability advocates say the Paterson Administration is more open and accessible to them, there is still a pattern of planning and making decisions without people with disabilities present and participating. New York State’s leaders cannot fully achieve the health care reform goal of more integrated services for lower per-capita costs unless they not only take phone calls from disability activists, but actually implement their recommendations.
Both the federal stimulus bill and an increase in the projected deficit from $13 billion to $14 billion came after Paterson proposed his budget. At press time, Paterson said he could negotiate some but not all of his Medicaid cuts. It was not clear that he only meant keeping measures to shift funds away from inpatient and segregated facilities and toward community programs. At times he didn’t seem to know that the stimulus bill won’t let the Medicaid increase be spent on non-Medicaid or general fund projects. The unfairness of his budget raised questions about his sincerity on disability issues, but he had an opportunity to put the people’s money where his mouth is. In the Legislature, the Democrat-dominated Assembly was gearing up to oppose just about all cuts, with the big health care lobbies and unions behind them, while the Senate, whose Democratic majority is much smaller, was relatively quiet. It seemed likely that the battle would be long and arduous, but hopefully we’ll be able to report the final outcome in our next issue.
School Abuse Gains National Attention
As we’ve reported, inappropriate use of restraints and seclusion on children with disabilities in public schools is a widespread problem in NY. While the other major state agencies that serve people with disabilities have strict policies limiting use of restraints and seclusion, the State Education Department (SED) does not. SED did try to issue policies limiting use of “aversive treatment” on children with disabilities, but that attempt was blocked by a lawsuit filed by parents of children incarcerated at the notorious Rotenburg School.
“Aversive treatments” are responses to behavior that are designed to be unpleasant and therefore to reduce instances of that behavior. Although restraints and seclusion can be aversive, existing state agency policies rule out their use for that purpose and permit them only as a time-limited means to keep people who are actively trying to harm themselves or others from doing so.
However, in public schools NY law permits the use of physical restraints such as straps and “take-downs”, and seclusion (“time-out rooms”), on kids with disabilities in response to any behavior that “threatens the good order” of the school, and sets no procedures for their use.
The federal Individuals with Disabilities Education Act (IDEA) calls for children whose disabilities involve behavioral issues to have specific plans to address them, including procedures for handling outbursts, how and when to notify parents about incidents, and the use of Positive Behavioral Supports. “Positive Behavioral Supports” is a form of applied behavior analysis that gives people rich opportunities to engage in meaningful appropriate behavior in natural settings such as integrated classrooms, and rewards that behavior. Behavior plans are to be implemented only with full parental knowledge and consent.
However, SED, which is responsible for enforcing IDEA in NY, has no effective method to ensure that this best practice is followed. As a result, many students with behavior problems have no formal behavior plans at all, and many others have plans that aren’t followed. Some teachers and school professionals, and many para-professional aides, aren’t appropriately trained to deal with behavior problems or implement behavior plans. In many cases restraint or seclusion is used without parental notification or consent. In a significant number of cases, the child gets hurt.
When serious incidents occur, the state’s response is inadequate. The NY Child Abuse Hotline is forbidden to accept reports of abuse of students by school staff, though they are supposed to refer such incidents to law enforcement agencies. Law enforcement agencies, however, typically refuse to act on such complaints. They tend to give greater credence to the word of school staff than to students or parents, and they view most such incidents as minor assaults not worthy of much investigation. The state Commission on Quality of Care (CQC), which is supposed to investigate serious incidents in programs operated or funded by state “mental hygiene” agencies, has no jurisdiction in public schools. The only authority specifically empowered to investigate these incidents is the district superintendent. The superintendent can take up to a year to investigate and issue a report. If the report indicates abuse is “not founded”, the issue can be appealed to the SED Commissioner, who has another year to act. So it can take up to 2 years for a complaint to be addressed, during which the staff involved are free to retaliate against the student and his/her parents. In any case, it is a clear conflict of interest to assign primary investigation responsibility for actions of school district employees to the district superintendent.
As the seriousness of this issue began to emerge in NY, it also surfaced on the national level.
In January, the National Disability Rights Network released its report on restraints and seclusion, School is Not Supposed to Hurt. Its cover shows a photo of a 7-year-old girl from Wisconsin who died while being physically restrained and excluded. In response, US Senator Christopher Dodd (D-CT) expressed shock that the Patient Freedom from Restraint Act, a bill he sponsored that was part of the Children’s Health Act signed by President Clinton in 2000, had not addressed this issue. But that law only covered facilities that get Medicaid or Medicare funds, not schools.
In May, the Council of Parent Attorneys and Advocates, Inc., released a report called Unsafe in the Schoolhouse: Abuse of Children with Disabilities. The report said: “In March-April 2009, we conducted a survey that identified 143 cases in which children were subjected to aversive interventions. We received reports of children subject to prone restraints; injured by larger adults who restrained them; tied, taped and trapped in chairs and equipment; forced into locked seclusion rooms; made to endure pain, humiliation and deprived of basic necessities, and subjected to a variety of other abusive techniques. The most recent report involved events revealed only in the last month: a father learned that his 8 year old son was restrained 60 times over a 9-10 month period.”
“Of the survey respondents, 71% had not consented to the use of aversive interventions; 16% had, but many believed the interventions would only be used in limited circumstances where there was an imminent threat of injury. Moreover, 71% reported that the children in involved did not have research-based positive behavioral intervention plans; 10% did (but the parents often said that the plan was not followed). 84% of children restrained were under 14 years of age, with 53% aged 6-10.”
“The use of abusive interventions primarily occurred in segregated disability-only classrooms or in private seclusion rooms, away from the eyes of witnesses, with only 26% of the respondents reporting incidents in the regular classroom. Almost every disability category was represented: Autism/Asperger’s Syndrome (cited by 68% of the survey respondents), ADD/ADHD (27%); Developmental Delay, Emotional Disturbance, Intellectual Disability and Speech/Language Impairment (14%-20% of respondents); Specific Learning Disabilities (11%), and others. Many parents also indicated that their children had Down Syndrome, epilepsy, Tourette Syndrome and other specific conditions.”
The House Committee on Education and Labor held a hearing on the issue on May 19. On the same date, the Government Accounting Office issued a report it compiled at the Committee’s request on the state of legislation affecting use of restraint and seclusion in schools, and on the facts surrounding several incidents involving the abuse or death of children.
As momentum built for passage of federal legislation on this issue, the California state legislature began working on its own bill.
Meanwhile STIC, working with other advocates and organizations, also made some process on getting a restraint bill passed in NY. This spring, final bill language was worked out and Assemblyperson Catherine Nolan became a sponsor. At press time, advocates hadn’t found a Senate sponsor. Misinformation to the effect that SED’s proposed regulations on “aversive treatments”, which have been enjoined by a court, would cover the issue was being circulated in the Senate Education Committee. We’ll keep you informed.
UHF Channels for Long-Term Care
Earlier this year the United Hospital Fund (UHF) released a report on long-term care reform issues, entitled An Overview of Medicaid Long Term Care Programs in New York.
UHF is a charitable foundation, one of whose purposes is to ensure stable funding for hospitals and other health care providers. The report was prepared by UHF’s Medicaid Institute, which is headed by James Tallon, a former NYS Assembly Majority Leader from the Greater Binghamton Region, who was later a member of the NYS Board of Regents and also a former chairperson of the Kaiser Family Foundation, a research leader in the health care field.
It is unclear why UHF issued this report at this time, but the report credits list several NYS Department of Health (DOH) staffers as major contributors, along with several representatives of the health care industry. In contrast, the report credits only two recognized representatives of the disability community that long-term care services exist to benefit.
The report has some interesting statistics on the long-term care system. It also draws conclusions about needed elements of reform, without making formal “recommendations”. Some of these conclusions are puzzling, and others are somewhat alarming, from a disability rights perspective.
The report is flawed because it is incomplete. It does not include the huge segment of NY State Medicaid-funded long-term care services administered by OMRDD, and it relies almost entirely on old data from New York City to assess what it loosely calls “personal care” services. As a result, it fails to describe all of the issues that affect the growth of long-term care spending.
The report notes wide variation in availability of in-home attendant services across the state because each county administers the services differently, but does not mention the fact that these variations are illegal under federal Medicaid law. Although NY has already taken (seriously flawed) steps toward establishing a “single point of entry” system for Medicaid long-term care services, the report seeks to revive debate over whether such a system should be created.
The report’s discussion of nursing facilities includes two notable points. First, while stating that nursing facility “beds” are increasingly used for short-term post-acute rehabilitation services, it claims that only 5% to 10% of people in those facilities could return to the community. The report observes that limited housing availability is a bottleneck. However, decades of successful experience in home-based service programs nationwide shows that people with any disability, requiring any combination of personal assistance and paramedical services, can be healthier and happier getting those services in their own homes than they would be in nursing facilities, and the aggregate costs will be lower. Yet rather than urging the state to beef up affordable integrated housing and homecare programs, it suggests that nursing facilities should be more “home-like”.
The report’s discussion of attendant services, even though it cannot be generalized beyond New York City, is rather disturbing.
First, it cites 1995 data indicating that 52% of “personal care” recipients in New York City have “cognitive impairments”. It lumps Personal Care, a program that provides less medically-intensive support services, with Certified Home Health Care, which offers nursing-like services, into its “personal care” category. In 1995 the Traumatic Brain Injury HCBS waiver did not exist, and the OMRDD HCBS waiver wasn’t serving large numbers of people. The people served by those two waivers are the most likely to have “cognitive impairments” and it is possible that many of them were using “personal care” services in 1995 but would not be now. However, the report jumps to the conclusion from this 14-year-old data that people with cognitive disabilities are poorly served by “personal care”. Without providing any evidence that this group of people needs or wants more comprehensive services, the report argues that they should be in managed care or on the Long Term Home Health Care Program (LTHHCP) waiver. This enthusiasm for managed care is surprising, since Tallon’s Kaiser Foundation released a major report showing that people with disabilities don’t get very good health care from managed care providers.
The Consumer Directed Personal Assistance program (CDPA), which allows people with disabilities to hire, train, schedule, supervise, and fire their own attendants, has been growing more rapidly upstate than in New York City. The report implies this is largely due to workforce shortages upstate, where workers aren’t unionized. However, the CDPA model has been available in NYC for much longer than it has upstate, which could mean the market has “matured”, accounting for slower growth, in the city. The report ignores the consistently higher consumer satisfaction data from CDPA programs. It is popular with recipients, who like being able to get attendants on their own schedules rather than an agency’s, and who prefer to work with attendants—often family members or friends—whom they can trust and get along with.
The report says that consolidating and simplifying the long-term care system is a good idea. But instead of merging all of NY’s long-term care waivers and administrative divisions into a single program within a single agency, the “consolidation” that UHF wants involves merging small local provider agencies with larger ones, like the big regional or national homecare agencies. Since CDPA is funded at a lower rate than “traditional” homecare, these providers would have a financial incentive not to offer it to recipients and instead steer them into higher-cost programs that don’t let them control their services. The “regionalized” system envisioned by the report, where differing local “circumstances”, such as the presence of large providers that monopolize referrals, would get to determine the point-of-entry, would make this easy for them.
The UHF report is dangerous. It lacks real input from the disability community. It was prepared by an organization whose purpose is to keep money flowing to large traditional healthcare providers. It was produced with the active involvement and backing of senior DOH staffers who, despite the Paterson Administration’s claim that it “listens” to people with disabilities, have largely ignored or resisted their requests for more integrated consumer-controlled services. Its “reform” agenda ignores the realities of the current long-term care system for many recipients—the 50% of people who don’t live in New York City, and all New Yorkers with developmental disabilities. It calls for maintaining and enhancing the status quo for large corporate health care providers, and aims at increasing the medicalization—and therefore the costs—of support services that are not primarily medical in nature while reducing consumer control over them.
Autism Advocacy and Services
For and By Autistic Persons
OMRDD is in the planning stages of creating supports and services for people with Autism Spectrum diagnoses. Unfortunately for OMRDD this means creating models of services focused around segregation. Currently OMRDD is going to put four group homes around the state for autistic people in Broome County, the Albany region, Staten Island and Long Island as part of a pilot project. OMRDD feels that their resources are best spent on these services because the parents have asked for them. However what parents have not been given is the right to a choice.
Without a choice how can the group homes be the best option and what can we do to get the supports in the natural home that parents need for their children? The best way to go about this is by becoming involved in an advocacy movement. The trick is finding the right advocacy movement to become involved with as well as one that follows the same principles that you ascribe to.
Then the question becomes, what advocacy movements can you become a part of? As always there is the option of supporting and joining in the advocacy efforts that STIC participates in. If you would like to know more about the advocacy efforts STIC is involved in you can contact our Advocacy Director, Susan Ruff, at (607) 724-2111 (voice/TTY).
However if you would like to focus solely on the advocacy efforts surrounding autism, there are three organizations: The Autism Self-Advocacy Network, Autism Network International and the Academic Autistic Spectrum Partnership in Research and Education.
The Autism Self Advocacy Network (ASAN)
The Autism Self-Advocacy Network (ASAN) is a non-profit organization run by and for autistic people. ASAN’s supporters include autistic adults and youth, those with other distinct neurological types and neurotypical family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to change public perception and combat misinformation by educating communities about people on the autism spectrum. Activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality-of-life-oriented research and the development of autistic cultural activities and other opportunities for autistic people to engage with each other.
Current topics that ASAN is working on include getting the Community Choice Act passed as well as getting the ABA bill, now going through Congress, to include other therapies besides just ABA.
I am in the process of creating a local chapter of the ASAN here in Broome County. To learn more about ASAN, their website is www.autisticadvocacy.org. If you would like to learn more about the local ASAN chapter, contact Robert Deemie through email at email@example.com.
Autism Network International (ANI)
Autism Network International (ANI) is a self-help and advocacy organization that is run by and for autistic people. They advocate for appropriate services and civil rights for all autistic people. As well, they educate the public. Every year ANI holds a conference called Autreat where autistic people come together to meet and learn from one another in an environment that is autistic-friendly. ANI’s website is http://autistics.selfip.org/intro.html and you can learn more about Autreat as well as read some of the writings of one of its founders, Jim Sinclair.
Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
The AASPIRE project brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of autistic adults. The partnership will adhere to the principles of Community Based Participatory Research (CBPR), whereby researchers and community members serve as equal partners throughout the research process. Additionally, researchers may be drawn directly from the community. Partners are expected to learn from each other and respect each other’s areas of expertise. If you would like to learn more about AASPIRE, you can visit their website at www.aaspireproject.org.
Exempt Income Protection Act
If you have old unpaid debts—and you get SSI, Social Security Disability or Social Security benefits—your bank account now has some protection from creditors.
For years there was a loophole in the laws that regulated debt collection in New York State. On January 1, 2009, that loophole was closed by the Exempt Income Protection Act.
Before January 1, credit card companies and other creditors took advantage of the fact that they could freeze bank accounts belonging to debtors, even if the money in the account was from SSI, Social Security, a pension fund, unemployment, or some other government benefit. The creditor couldn’t take the money out, but they could make it impossible for the person who owed them money to write any checks until that person “proved” to them that the money in the account was “exempt” and the account was released—and that might take several weeks. A bank statement showing a direct deposit was proof, but, on the other hand, if the timing was wrong, next month’s benefit check would go into the frozen account (you can put money into a frozen account but you can’t take it out), so if you had unpaid debts, direct deposit was both a good thing and a bad thing.
In addition, the bank charged a fee (up to $150) for their trouble in freezing the account and there was a fee charged for every check that bounced while the account was frozen. So even after the account was unfrozen, there was less money in it than before. To protect what little money they had, many people on government benefits closed their bank accounts and started paying bills in cash; a difficult task for a person with a disability or anyone without a car.
As of January 1, 2009, when a bank receives a restraining notice for a customer’s account, a certain minimum amount of money must remain unfrozen and available for the account holder’s living expenses. If funds that can be identified as Social Security or some other exempt income have been directly deposited into the account within the 45 days before the bank got the restraining notice, then $2,500 of the account will remain unrestrained. For all other accounts, including those with earned income, $1,716 must remain unrestrained. That amount is about two months of income at the minimum wage and it will increase every time the minimum wage increases.
Any amount in a bank account that is above these amounts can be frozen, and the bank can charge a fee to that account.
What if you owe money, like a student loan, to the federal or state government? What if you have a joint account with someone and the account is frozen because of the other person’s debts? You will still have to ask for legal help with some situations, but the freedom to have your disability benefits deposited in your own bank account, especially if the balance is usually less than $2,500, is greatly enhanced by this new law.
Group “Homes” vs. Real Homes: A Guide
The OMRDD propaganda machine has gotten out of control recently. In a remark reminiscent of George Orwell’s “doublethink” (from the novel 1984, in which the “Ministry of Peace” conducts wars and the “Ministry of Love” tortures people), OMRDD Commissioner Diana Jones-Ritter told STIC Executive Director Maria Dibble that she is offended when people call group “homes” “facilities”. “They are not ‘facilities’!” she said, “They are homes!”.
So let’s get back to basics.
What is a Group “Home”?
A group “home” is a small institutional facility, typically housing between 6 and 12 people but sometimes as few as 4 or as many as 18 or 24 people with disabilities. It has most or all the following characteristics:
- The adults who live there do not make the rules.
- The adults who live there are not allowed to choose the people they live with.
- The adults who live there are often coerced, using methods ranging from persistent pressure from staff, through public shaming, to punishment for “non-compliance”, to do things they don’t want to do, including taking part in group activities, instead of being allowed to make their own choices.
- The adults who live there have no guaranteed privacy in any part of the facility, including the bathroom.
- The adults who live there are not allowed to come and go freely, eat meals of their choice at times of their choice, or interact with friends or significant others as they choose.
- The adults who live there are more or less continuously subjected to actual or quasi-medical “treatment” whether they choose to be or not.
- The adults who live there spend most of their time either with other people with disabilities, or with nondisabled people who are paid to be with them.
What is a Real Home?
A real home is a place where an adult chooses to live, sometimes with a significant other or friend, or with family members. It has most or all of the following characteristics:
- The adults who live there make the rules.
- The adults who live there have freely chosen the other people who live with them, if any.
- The adults who live there have freedom of choice regarding all of their activities.
- The adults who live there can have, and enforce, privacy as they wish.
- The adults who live there can come and go freely, eat what they want when they want, and have complete freedom of association with whomever they want.
- The adults who live there can choose whether or not to seek medical or psychological treatment, and with the exception of taking medications, generally do so outside the home.
- The adults who live there choose with whom to spend their time, and though people with disabilities living in their own homes may have some interaction with people who are paid to serve them, they typically do not spend most of their time with such people.
We talk about adults here because in America adults are assumed to have the right to make their own decisions. Children have fewer rights and choices but even most parents of nondisabled children would not subject them to the smothering oversight and inflexible routines that are common to these institutional settings.
In the Disability Advocates, Inc. v. Paterson lawsuit, a federal judge accepted several characteristics of institutional settings put forward by the plaintiffs. Size was not among them. A trial is under way in which those characteristics will be used to determine whether the NYS Office of Mental Health obeyed the Americans with Disabilities Act’s requirement to ensure that people with disabilities receive services in the most integrated setting. Here are the characteristics that the judge agreed tend to define an institutional setting, without reference to its size:
- “Individuals ... reside in close quarters entirely with other persons with disabilities.”
- “Residents ... receive treatment from on-site doctors and nurses.”
- “Residents line up to receive medications from ... staff, and self-administration of medication is discouraged.”
- “Aides instruct residents as to what to do at various times of the day, including when to eat, bathe, and take medications.”
- “Residents ... are assigned roommates and lack privacy.”
- “Residents can only receive calls coming through the ... switchboard and/or on extensions or pay phones in common areas.”
- “[The facilities] have visiting hours, and visitors must identify themselves and sign in with the home.”
- “Visitors are received in ... common areas, unless the resident’s roommate or management grants permission for visitors to enter their bedroom.”
- “[The facilities] do not permit visitors to join in meals or stay overnight.”
- “Residents are limited in the times that they can leave the [facilities], given rigid schedules for meals, medications, and distribution of personal need allowances. [The facilities] have curfews after which doors are locked and ... residents are not provided keys...”
Group homes are workplaces for paid staff and their routines and procedures are designed for the efficiency and convenience of the staff. As in all facilities, when family members or officials visit, the staff are on their best behavior, and what those visitors see is not what ordinarily goes on when the visitors are not there.
Group “homes” are institutions. They are not homes. The only real home is YOUR home.
CDPAP - FAQ
(What DO all those letters mean?)
Whether I spell it out or use the acronym, the most Frequently Asked Question (FAQ) about CDPAP (the Consumer Directed Personal Assistance Program) is what does it mean?
Let me answer by telling you about the program and its successes.
“Consumer Directed” means that the consumer (or user) of the program has a lot to do with how the program runs. For this program, the consumer is a person of any age with a disability and eligible for Medicaid. When the consumer is unable to direct the program for him or herself, a surrogate such as a parent (of a young child) or the child (of an older parent) may direct the program.
In a nutshell, this program allows a consumer to choose and hire a personal assistant who will come to the home to help with personal care and light housekeeping. Anyone with a disability and on Medicaid is eligible for CDPAP.
CDPAP is good for those consumers who like the idea of choosing their assistant(s) and setting their own schedule for when work will be done. CDPAP is also very good for the state budget. CDPAP is the cheapest way to maintain people at home (where most want to be).
In Broome and Tioga counties, we serve about 225 people.
One of those 225 people is a man who, but for CDPAP and our partners at Broome County CASA, would be in a facility. Instead, he is at home. Because of his condition, he needs total care and uses a ventilator to breathe. With the help of rather sophisticated electronics, he is able to communicate and use the Internet. Just recently, he has expressed the need for something to do with his time. We hope to help with that, too.
CDPAP also supports children with disabilities whose families need extra assistance with home care. One such young woman had been with us long enough that we have supported her through college and into the world of work.
We always have room for the program to grow so do help us to spread the word that care in the home is available in Broome and Tioga Counties. We are happy to answer all questions: Call STIC at 724-2111 (voice/TTY) and ask for CDPAP staff: Joy, Sue, or Kami.
Lucretia Emilio, a STIC service coordinator and supervisor of our Day Habilitation without Walls program, has received the Pi Alpha Alpha national honor society for public administration award. We’re all very proud of her achievement.
In Memoriam: Lisa Theodore!
STIC deeply mourns the sudden and very unexpected passing of Lisa Theodore on March 11, 2009. Lisa worked in our Job Connections supported employment program for five and a half years, starting as an Employment Advisor and eventually assuming the position of Coordinator, which she held until her death. She was a valued employee and good friend of her co-workers at STIC. Her consumers always came first, and it was obvious that she cared very much about their goals, dreams and successes. She was a staunch advocate for the rights of people with disabilities, helping many people to find and/or keep integrated jobs in the community. She brought a wealth of knowledge and experience to STIC and never seemed to get flustered no matter how great the challenges she faced. I will always fondly remember her humor and easy laugh. In the end, all any of us can ask for is that we make a difference in the lives of the people we touch. Lisa most assuredly did. She will be missed and she will be remembered!
I am the newest service coordinator here at STIC. I have been a service coordinator in the community for the past 3« years and I enjoy what I do very much. I earned a Human Development BS degree from SUNY Binghamton and an AAS Paralegal degree from Broome Community College. I am also a mother of four children and will become a proud grandmother in October with the birth of my first grandchild.
The most interesting thing about me is that I am a volunteer firefighter for Triangle Volunteer Fire Company. Currently my position there is Fire Police Captain. I am an interior firefighter and I am also on the Broome County Search and Rescue Team. My next project is training a dog to join the Search and Rescue Team. I love the memorial that we have to service animals here at STIC and am looking forward to bringing my dog in for visits. I also teach Family Education and Trainings on fire safety. I bring a fire truck and that class is a great deal of fun for the whole family, so stay tuned for the next session and come meet me and join the fun!
I am the new information & referral coordinator for STIC’s Early Childhood Direction Center (ECDC). I am thankful to be here in Oz, surrounded by friendly and caring people, as I start this new chapter in my life. I have worked with preschool age children in both a private day care center and then in a Head Start classroom for over a decade. I currently have my degree in Community and Human Services and plan to start looking into grad school soon.
My daughter (Tara) is almost 16 and being her mom is the single best thing that will ever happen in my life! We live on the East Side of Binghamton (with our dog Louie) and can usually be found watching NY Yankees games together.
I am STIC’s new parent mentor. I earned a bachelor’s degree in Law and Society from SUNY Binghamton and an associates degree in Business Administration from Broome Community College. I entered the field of conflict resolution in 1991 and worked for ACCORD, A Center for Dispute Resolution from 1991-2008. My certifications are in Special Education, Family Court (Custody/Visitation and Child Support), Department of Labor and Divorce Mediation. I have developed and implemented Peer Mediation programs in 11 area schools and have also provided mediation and conflict resolution training to law enforcement officers, school personnel, students, public assistance recipients and jail inmates. I am certified through the New York State Office of Court Administration to train mediators in Custody and Visitation mediation. I am also an approved New York State Criminal Justice System Conflict Resolution Trainer.
Currently I have my own private divorce mediation business in Binghamton and have been practicing Divorce Mediation since 2001. I am a member of the New York State Dispute Resolution Association. I live in the Town of Maine with my husband Scott and our 3 sons, Bryan age 11, Matthew age 9 and Ethan age 6, along with our black lab named Pirate.
I am impressed with the dedicated staff and the wide range of services provided by STIC. I am looking forward to contributing to this outstanding organization.
Southern Tier Independence Center
Dr. Tim Feeney
Positive Behavior Supports and Autism
Tim Feeney, Ph.D. is the Executive Director of School and Community Support, Inc. For the past 12 years he has also been the Project Director of the New York Neurobehavioral Resource Project, a New York State Department of Health grant-funded program developed to support individuals with brain injury and significant behavioral challenges to live successfully in their home communities.
In addition, Tim has extensive experience developing services for individuals on the autism spectrum; this includes work with school districts that support students with autism, Asperger’s syndrome, or pervasive developmental disorders.
1 -3 PM workshop
5 - 7 PM workshop
For more information contact:
Early Childhood Direction Center
(607) 724-2111 (voice/TTY)
People who attended the Consumer Reception on April 23 found a delicious buffet courtesy of our generous local businesses. We would like to extend a big Thank You to the following:
House of Reardon
Marilyn’s Bake Shoppe
Nirchi’s Pizza, Main Street location, Binghamton
Pepsi Bottling Group, Inc.
Price Chopper, Glenwood Avenue location, Binghamton
The Sports Page
Subway, Robinson Street location, Binghamton
Access to Farmers’ Markets
Would you like to visit the farmers’ market in downtown Binghamton but do not have access to reliable transportation? There is a new door-to-door service being started through Faith in Action Volunteers, a program of the Broome County Council of Churches. The Faith in Action bus will run on Tuesday and Friday in the morning and make one run to the farmers’ market on Collier St in downtown Binghamton. For more information, please contact Faith in Action at (607) 724-9130 ext. 304.
Chenango and Madison Counties
We all know how important it is to eat healthy. Now healthy food and convenience are affordable. Chenango Madison Bounty, “Farmers’ Market at Your Door” is a program that delivers fresh, nutritious food right to your door in Chenango or Madison County as often as once a week. You’ll find all the essentials including eggs, milk, yogurt, cheese, meat, vegetables, fruits, bread, and even some things you may not have tried before. It’s usually grown or produced right here in your community, and always within New York State; plus the price includes delivery! Give them a call to learn more at (607) 334-3231, ext. 4.
Free Cell Phones
If you receive Medicaid and SSI, you can get a free cell phone and 68 free minutes per month. You have the option of purchasing a card and putting more minutes on the phone if you want. Check out:
New York Prescription
Saver Program Provides Discounts
Effective April 1, the New York Prescription Saver Program will provide enrolled individuals a pharmacy discount card which will offer discounts on prescription drugs to NY residents who have limited income. NYS residents are eligible if they are not already receiving Medicaid and are either between the ages of 50-65 or people with disabilities who have been determined disabled by the Social Security Administration. Eligible parties must also have an annual household income less than $35,000 for single people or $50,000 for married couples. Savings will vary depending on the quantity, type and brand of the drug purchased but could be about 30%-40% off the price of generic drugs, and at least 25% off the full retail price of brands. To learn more about this program or to apply, go to: http://nyprescriptionsaver.fhsc.com.
Sensory Friendly Films
Our local AMC Theatre (Vestal Town Square 9, 2425 Vestal Parkway, Vestal) is proud to announce that their theatre has become the newest location of AMC Sensory Friendly Films. This national program was developed through a partnership between AMC Theatres and the Autism Society of America.
The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up (on medium - you can see all the seats and the aisles), the sound turned down (mono speakers from the front near the screen), and audience members are free to get up and move around! They can leave the theatre and return as needed. Families are allowed to bring their own food (no glass bottles, please). This will help those with gluten or dairy issues or other food problems. The theatre’s popcorn is gluten free and their concession stand will be open.
The idea for the program began when a parent with a child with autism requested a special screening at AMC Columbia Mall 14 in Columbia, MD. More than 300 children and parents attended the first screening there. The program has expanded across the nation to larger AMC theatres. Our local theatre’s manager, Heather Meisner, was persistent in her many requests and AMC added our local theatre to this program.
This is not limited just to kids on the autism spectrum. Children with sensory integration problems are welcome and kids can invite their siblings and friends.
Cindy Huffstickler, AMC Entertainment Inc. Community Relations Manager, said, “Anyone can come! We often hear from parents that this is the first time they have come to the movies with their child.”
Sensory Friendly Films will be shown once a month and we look forward to future shows.
If you have questions or would like to find out the schedule, contact Heather Meisner at (607) 770-1930.
We at STIC hope that many families will come to these shows and that your children will have a wonderful experience.
Web Access to Benefits
The New York State Office of Temporary and Disability Assistance has a new website where you can learn about various public benefits. Find out if you’re eligible for benefits such as Medicaid, food stamps, the Home Energy Assistance Program and lots more; check the status of your application(s), and check your accounts at: www.mybenefits.ny.gov