AccessAbility

by Maria Dibble

For the last 26 plus years, I’ve been privileged to serve as STIC’s Executive Director. In that time period, I have, unfortunately, witnessed a persistent lack of common sense, and a pervasive will to disregard the obvious, when it comes to issues related to Personal Care Attendant (PCA) services (which includes the Consumer Directed Personal Assistance program, or CDPA), as well as other programs that focus on community integration vs. institutionalization.

Repeatedly since the 1980s politicians and bureaucrats have sung the same tune when it comes to the Medicaid-funded PCA program, and the words to that song go something like this:

NY spends more on Medicaid and PCA than most states in the nation.
PCA is an optional service so why should NY offer it?
New York City allocates too many hours to consumers.
NYC expenditures on PCA are out of control!
Why should people with disabilities get maid service funded by Medicaid?
Long-term care expenses must be curbed, we’re in a budget crisis.
PCA is a luxury, not a necessity.

And the chorus would be:

We need to cut, we need to save, we need to lessen the deficit.
People need to understand, we need to manage costs.

So, you might ask, if this same song has been sung for 26 years, why haven’t they fixed the problems? And believe me folks, I truly have been hearing these same justifications for cuts from every Governor from Cuomo to Paterson and everyone in between. Because Medicaid is such a large portion of our budget, it obviously will be one of the places to look for cuts, that I understand. But what I cannot grasp is why, year after year, government officials pick on the least expensive (by hourly rate) of the programs on which to focus most of their attention. I’m not saying they don’t cut other Medicaid programs but PCA seems to be a favorite.

This year, the Governor decided to force anyone receiving more that 84 hours a week of PCA to change to a program that could “ manage their care”. Included in the programs they could be transferred to were the Long Term Home Health Care Program waiver, Managed Long Term Care, and the Nursing Facility Transition and Diversion waiver. After some advocacy efforts, including a meeting with the Governor, CDPA was removed from the chopping block, but not the rest of PCA (see Paterson's State Budget: Taking Out a Policy for more details).

These poorly thought-out proposals are coming from the Department of Health, are fed through the Division of Budget (basically number crunchers who eventually crunch people too) and are whispered straight into the Governor’s ears. Why does he listen?

A reasoning and thoughtful person might ask, “why favor more expensive residential programs, including institutional placements such as nursing homes, over less costly community-based support services?”

Are these people stupid? Well, I’ve met with them, they aren’t stupid at all. They are well-educated individuals with a good deal of knowledge. Okay, so that isn’t it.

Perhaps they lack awareness of the issues or suffer from serious misconceptions?

Well, yes there is definitely some of this. A few legislators persist in thinking that PCA is a maid service, a luxury not worth the money. They focus on it being an “optional” service, as defined by the feds, so therefore it isn’t needed.

Many of us, year after year, address this issue by telling them in very blunt terms what PCA really is: a program that helps to keep the home of a person with a disability clean, that helps to prepare meals so that the person doesn’t have to live on unhealthy fast food, that assists the person to bathe, dress and use the toilet. If there are any public officials that think that being wiped by a stranger after using the toilet is a “luxury” well then no amount of information or justifications will change their minds. Fortunately, these folks are not in the majority.

And the service is only “optional” in the sense that states are not required by federal Medicaid law to offer it. States are required to offer nursing facility services though, which are much more expensive. If a state wants to save money as well as improve quality of life for people with disabilities by keeping them out of nursing homes, then PCA is not optional, it’s a necessity. That’s a point that’s harder to make clear, but most people get it once it’s explained to them.

So, what does that leave? I can only speculate that it comes down to this: those special interests on the other side of the issue have very deep pockets, and those pockets are generously disgorging dollars to keep institutions open and the antiquated service system in place that supports them.

These dollars, combined with the historical beliefs that people with disabilities are safer in institutions, that they can be better served in them and that congregate care is cheaper, build a steadfast wall of denial and entrenched ideology against us.

Some would say with these special interests arrayed against us, with the Department of Health proposing cuts to personal care to the Governor and the Legislature over and over again, that there is no hope for “beating the bucks”. Not so! The combination of the truth, along with our anger, outrage, frustration and total disgust with efforts to keep people with disabilities in segregated environments and powerless to act, will prevail. With many advocacy groups around the state rallying to the call, we will soundly defeat the misinformed budget analyses being circulated by DOH that project false savings based on unsupported assumptions.

More importantly, with our neighbors, co-workers and friends on the streets and in their offices protesting if necessary, we will eventually win the battle of public opinion. In time, the majority of the public will understand that open communities are safer than closed-off institutions, that life is better for their elderly and disabled relatives when they can be part of the community, and that integrated services take less out of their own pockets than segregated programs. When that happens, big-money lobbyists for institutions and paternalistic traditionalists will be shamed out of existence.

For, when it comes right down to it, no wall can stand forever if it is attacked with persistence, fervor and the demand for freedom. The walls of Jericho didn’t stand, and they were a heck of a lot stronger than the one erected by the bureaucrats. Furthermore, there are many many good people standing behind that wall. They side with us, they believe in our rights and they have often voiced their support. So to the legislators, public officials and your staff who have been our allies, please keep standing with us. Together, let’s sing a different song: “We Shall Overcome!”

The state faces a multi-billion dollar budget deficit again this year, perhaps as high as $8 billion. Economists say that New York slid into the recession relatively late and will take longer to come back out. Things would have been much worse without the Obama Administration’s stimulus package. That package created and saved jobs; without it, the unemployment rate (nationally at 9.7% at this writing) would have been much higher by now. The package also temporarily increased the federal share of Medicaid for NY from 50% to 56.2% for two years; without it, we’d have a deficit closer to $13 billion this year—the likely figure for 2011-12, by the way.

Most of the state’s disability policy gets made during the annual budget process. That’s bad news for people with disabilities, because policy discussions should focus on how to maximize community integration and productivity, not on how to save money, but that’s how business is done here. So this “budget article” covers disability policy issues and how they’re being handled.

Homecare

Governor Paterson has once again made homecare proposals that are not only destructive of integration and productivity, but also clearly irrational from a fiscal viewpoint. They only make sense if we consider who the special interest lobbyists are.

Paterson’s long-term care budget proposals are developed by DOH staff. In the initial proposal, DOH planned to cap two types of homecare services, Personal Care Attendants (PCA) and Consumer Directed Personal Assistance (CDPA), at 12 hours per day (or 84 hours per week). Anyone who needed more than that would be moved into a different program, and supposedly wouldn’t lose any services. DOH claimed that PCA and CDPA spending is growing rapidly while the number of people served has decreased, and that these measures would save some $30 million in the next fiscal year. But DOH’s claims don’t stand up to scrutiny.

DOH’s figures show that the total number of people receiving any type of DOH-funded long-term care residential services, segregated and integrated alike, decreased by about 8,000 people between 2003 and 2008. DOH’s figures don’t include people in the TBI waiver, but it doesn’t seem likely that this could fully account for the decline.

However, over the last 15 years, unexpected trends have emerged. First, elderly people seem to be healthier and aren’t entering the long-term care system as early as they used to; therefore the expected massive increase in long-term care usage by baby boomers hasn’t happened, though it probably will show up as this group gets older. Second, the number of non-seniors using home-based long-term care has increased, and their needs are much more intensive than what used to be the norm for this group. Therefore, they use more hours of homecare than before. It is only the relatively low unit costs for CDPA and PCA that make it possible for these people to remain in their homes and participate in the community.

DOH’s figures also show that the number of people using more-expensive Certified Home Health Aide (CHHA) services also declined, but CHHA spending increased at almost twice the rate as that for PCA and CDPA, during the same period. Yet there was no proposal to cap CHHA hours.

When asked where people using more than 84 hours of PCA or CDPA service would go, DOH said they could go to CHHA programs, the Medicaid Long Term Home Health Care Program (LTHHCP) or Nursing Facility Transition and Diversion (NFTD) waivers, or to Managed Long-Term Care. This made no sense at all. The hourly rate for all of these programs is higher than that for both PCA and CDPA. CHHA is not available uniformly in all locations and it is common for CHHA providers to turn away people with intensive needs. LTHHCP has a cap on services; most people who need more than 84 hours of attendant services would not be eligible for the program. As currently regulated, the NFTD waiver can only provide attendants to people who need supervision due to cognitive disabilities, so again, most of these people would not be eligible for those services. And Managed Long-Term Care providers will not accept people with very intensive service needs because the rate they get from the state won’t cover their costs.

New York’s disability advocates have been talking with DOH officials for years. When this proposal came out, they quietly told them that it could not possibly work. At best, it could produce very short-term savings by cutting people with disabilities off from vital services. Without those services, which, realistically can’t be picked up by any other integrated program, these people would be forced into nursing facilities within a few weeks or months, at a cost at least three times higher than what was being spent to serve them in their own homes. Mark Kissinger, the DOH official who heads the Long-Term Care division, insisted that this proposal would save money while not denying any needed services, and claimed he had the figures to back him up. He said he would make those figures public but at press time he had not done so.

At a DOH briefing on the homecare proposals on January 22, Kissinger indicated his belief that large numbers of unnecessary services are being provided, especially in certain zip codes in New York City, and that any type of homecare service that is “managed care” would automatically control this problem without hurting anybody. Advocates said that most homecare recipients need nothing more than the attendant services in their homes and that adding a “management” aspect, such as waiver service coordination, would simply increase the total cost of serving them. They said that if there is a specific problem with certain programs in New York City, then DOH should correct it instead of cutting services across the entire state. They also noted that in the current year’s budget, funds were allocated for an “assessment center” in NYC to address this issue, but DOH hadn’t started that program. Why, advocates asked, was DOH proposing a completely different plan before it had even tried to carry out last year’s alleged solution?

Getting nowhere in private, ADAPT activists confronted Paterson at a public meeting in Rochester on January 26. They told him that his plan to cut attendant services would not save money and would force people into nursing facilities. They also said they had given DOH concrete suggestions, backed by real numbers, for saving more money while providing integrated services. Paterson agreed to meet to discuss it.

The meeting was held in Albany on February 1, with advocates from around the state, including STIC Executive Director Maria Dibble. The advocates said that CDPA has the lowest hourly rate of any form of homecare and it was simply impossible to save money by moving people out of that program to any other homecare service. They presented data to show that moving people out of CHHA and PCA and into CDPA would save more money than DOH’s plan. The NYC issue and the assessment center came up again, with advocates again requesting data from DOH on the former, and advocating for the implementation of the latter instead of these cuts. Paterson seemed to understand the issue and asked some hard questions of his staff.

Perhaps PCA costs are higher in New York City simply because more people with more significant disabilities live there, and they are institutionalized less often than in upstate communities. According to DOH’s own figures, NYC has 50% more disabled and/or elderly Medicaid recipients than the rest of the state, yet 16% more people live in nursing homes in the rest of the state than in NYC. In New York State, one out of three Medicaid dollars spent on seniors and people with disabilities outside of NYC is spent on nursing home care, compared to one out of four in NYC. Add to this the fact that according to 2007 US Census bureau data, disability severity rates in NYC are higher, with 12% of the non-institutionalized civilian population in the city having 2 or more disabilities compared with 7% to 9% in the rest of the state, and it is a wonder their PCA costs aren’t even higher.

When Paterson announced his 21-day amendments to his budget plan, he dropped the idea of capping CDPA hours, but kept the cap on PCA hours. He also said that CHHA services had been excluded from cuts “by mistake”, but the information issued on how CHHA would now be affected was vague and unclear. There was also mention of providing an “enhanced rate” to Managed Long-Term Care providers to induce them to take on higher-needs people.

Although advocates were pleased that CDPA was excluded from the cap, the revised plan will still force people who need lots of PCA services into more expensive programs, including new “enhanced rate” managed care programs, as well as nursing facilities. This plan won’t cut costs, but it will help nursing facility operators, who are struggling to fill beds at a time when increasing numbers of people do not need or want their services.

On the same day that Paterson released his 21-day amendments, the Assembly held a public hearing on health issues. When Assemblyperson Gottfried, Chair of the Health Committee, asked Kissinger how he would achieve $30 million in savings from fewer than 5,000 people, he replied, “by cutting their hours”, directly contradicting his earlier claims.

Legislative leaders in both the Assembly and the Senate indicated that they are not happy with the DOH plan at all. Advocates were hopeful that the PCA cap would also be removed in the final budget agreement.

The Governor also wants to double the current “assessment” (tax) on homecare providers. This is a sneaky (though legal) way for the state to claim more federal Medicaid reimbursement than would be justified by actual expenditures. Meanwhile, it tends to hold down wages for homecare workers, who don’t make much to start with, and causes recruitment and retention problems.

Early Intervention Services

Another set of budget proposals that concern disability advocates relates to the Early Intervention (EI) program. This program provides services, including therapies and medical equipment, to children from birth to age three who have disabilities. It is designed to minimize the impact of disabilities on child development and maximize functioning. It reduces the amount of services the person will need in later life, so it saves money over time. Over the years governors have tried to cut this program. This year’s effort is more wide-ranging than usual.

Perhaps the worst proposal is to cut rates for home-based services and increase them for clinic-based services. Some early intervention services involve skills training that, to be effective with kids with intellectual or cognitive disabilities, must be done in the places where the skills will actually be used. Moving this service to clinics will make it more expensive to provide and less effective. It will also cause some low-income people in rural areas to lose services entirely, since it will force in-home providers out of business and the families won’t be able to afford to bring their children to the distant clinics.

Another proposal is to require parents to pay a sliding-scale fee for EI services, an idea that has been rejected by the Legislature numerous times. The fees, which affect families with incomes above 250% of poverty level, would be unaffordable for single-parent families with one or two children, and would discourage better-off families from getting all of the services needed. As structured, they might not even cover the added cost of collecting and processing them.

Some advocates objected to a plan to let “paraprofessional aides” deliver EI behavior management services to children with autism and other disabilities. It is not considered best practice to diagnose children with autism spectrum or behavioral disorders before the age of three, the cut-off age for EI services. However, a few younger children do get these services. STIC believes it is necessary to reduce service unit costs in order to meet the needs of more people, and that many support services for people with disabilities are over-professionalized. CDPA is a good example of how people who aren’t highly educated or credentialed can deliver critical health-related services, including catheterization and ventilator maintenance, while keeping costs down. In any case, this measure only affects a handful of people.

OMRDD

OMRDD has provided a “briefing booklet” about its proposals (as with homecare and DOH, the “Governor’s” developmental disability service proposals come from OMRDD, not the Governor’s office). We have also looked at the NYS Senate’s “blue book” summary of Paterson’s budget plan. Neither of these documents provide complete details. This is probably by design, in keeping with OMRDD’s failure to provide information to the Most Integrated Setting Coordinating Council on how many people it currently serves in segregated residential settings and how much it costs. They don’t want advocates to run those numbers.

So, in order to analyze them we’ve made some reasonable assumptions and seat-of-the-pants calculations. We know that our figures are not strictly accurate, but we are confident that they are good ballpark estimates that accurately reflect OMRDD policy.

OMRDD claims it “balances” resources between integrated and segregated services. It is true that OMRDD has increased the availability of integrated support services over the years, though at a very slow pace, and plans to do so again in 2010-2011. Some of the increases are for employment or “day program” services; others involve residential services. OMRDD plans to provide $7 million in new money for “Family Support Services” (FSS) to serve about 4,300 people with developmental disabilities and their families. They are adding 1000 new At Home Residential Habilitation (AHRH) “slots”, a pilot program to provide intensive behavioral supports to 200 people, and 1600 new slots for employment and day services. On the residential side, the NYS CARES program will have 1000 new “in-home” and 530 new “out-of-home” slots. This may look like a heavy shift in favor of integrated residential supports, but these numbers are misleading. When we look at the money being spent, even when taking into account the fact that segregated services are more expensive, we will see that OMRDD will still spend a highly disproportionate share of its new funds on segregated congregate residential facilities.

Budget amounts weren’t available for all of these items. However, we know how much it costs OMRDD annually, per person, on average, to operate group homes and to provide HCBS waiver supports to people who live in integrated settings. We also know how much OMRDD spends annually, on average, to provide supported employment services to a person. We don’t have room to lay out our calculations here, but we’ll gladly provide them on request. To summarize:

OMRDD plans to spend about $28.55 million for new individualized integrated residential supports in 2010-11. That’s new money, to fund new services for people not already receiving them; it doesn’t include things like cost-of-living increases for existing services. It does include estimates of what they will spend for those new “in-home” residential, AHRH and Intensive Behavioral Supports slots, plus the new FSS money. This money will serve at least 4300 people, a conservative number that assumes that everyone who gets the new AHRH or behavioral services will also get the FSS services. That’s an average of about $6,640 per person. On the other hand, they plan to spend about $73.45 million for new segregated congregate residential services for 530 people, including the NYS CARES allocation and a separate budget line item of $40 million for capital construction for residential facilities. It may be slightly inaccurate to assume that all 530 “out-of-home” residential slots will be in segregated congregate settings such as group homes, but that is OMRDD’s typical pattern; probably integrated settings such as supported apartments will be no more than 5% of that number. Taking that into account, that averages out to about $138,000 per person for new segregated congregate residential services.

Now we know that it costs OMRDD about 3 times as much to provide segregated congregate residential supports to a person as it does to provide equivalent individual integrated supports. So an equitable distribution of new money between segregated and integrated residential services would differ by no more than 300% per person. In fact, OMRDD’s proposed new money allocations for 2010-11 for residential services differ conservatively by over 1800% between integrated and segregated options.This is not “balanced”. OMRDD’s claim that it equitably balances expenditures between integrated and segregated residential services is false.

OMRDD officials will say this isn’t accurate and they’ll mention hundreds of millions of dollars spent each year for integrated services. But they’re comparing apples and oranges, because that figure includes all previously-existing as well as new integrated services, and it includes day and employment services as well as residential services. And they will be comparing it to our $73.5 million figure for new segregated residential services instead of the well over $1 billion they spend every year on old and new segregated residential services combined. Our figures compare apples to apples and refute these claims. Advocates need to question OMRDD officials closely about their numbers.

OMRDD plans to add insult to injury by cutting funding for some integrated services, even though its overall agency budget will grow. At the same time that it’s adding new day service slots it is cutting the rate it pays for Day Habilitation. It also appears that they are cutting the rate for Service Coordination while increasing the caseloads. While increasing caseloads can recoup costs, it reduces the amount of time service coordinators can spend working with consumers and families, with predictable reductions in quality, especially in the “Self Determination” program. They are also proposing new “utilization controls” that will let people get PT and OT from Article 16 clinics for rehab only. This could force hundreds of people who need PT and OT for maintenance purposes to enroll in Day Treatment (segregated congregate day programs) in order to get it, reducing opportunities for meaningful work and integrated community activities.

Bright Spots

There aren’t many bright spots in Paterson’s proposed budget. For what it’s worth, here they are:

Centers for Independent Living like STIC are held at level funding.

There don’t seem to be any significant cuts to VESID case or supported employment services.

Funds are budgeted for Paterson’s proposed plan in response to the DAI v Paterson decision that ordered the state to move people with mental disabilities from adult “homes” to individual supported living settings (see Courts Watch). The plan, which would move only 1000 of the 4300 affected people over five years, is inadequate, but at least it is headed in the right direction.

Relations between the Governor and both houses of the Legislature are contentious, and no doubt there will be many changes before the final budget passes. We’ll keep you informed.

In December a public meeting was held on Broome Developmental Services (BDS)’s plan to build a group “home” for autistic children on Binghamton’s South Side. The meeting was hosted by the Southside West Neighborhood Assembly. BDS Director Carl Letson made a presentation about the plan, as did some neighborhood residents. Binghamton Mayor Matt Ryan and City Councilperson Sean Massey attended, as did about 75 other people.

The residents’ presentation featured video of the proposed project site, which is on a steep hillside and contains a deep, wide drainage ditch. As we’ve reported, this site has been deemed unsuitable for development for almost 50 years. It has been the source of repeated flooding in the neighborhood, a problem that was only recently, and partially, corrected at a cost of several hundred thousand dollars. Residents are concerned that construction on the site will worsen the flooding problem again, and they pointed out that the lack of sidewalks and the significant distance from any kind of community commercial or recreational locations make it a poor choice for a home for children with disabilities. The residents made it clear that they would hold BDS and the City legally responsible for damage to their property resulting from the project.

Letson’s presentation revealed a number of points.

The physical design of the proposed facility was determined by Raymond Romanczyk’s Institute for Child Development (ICD), and is intended to facilitate ICD’s planned experimental program. Letson said BDS was willing to consider alternate sites, but he deflected residents’ and Mayor Ryan’s suggestions of existing vacant houses elsewhere in the neighborhood or city by saying that the project must be new construction that meets Romanczyk’s requirements. Romanczyk practices a form of Applied Behavior Analysis called Discrete Trial Training, also known as the “Lovaas Method”. The method features repetitive mechanical training in highly-structured artificial environments divorced from any relationship to real-life settings. Research has shown that the Lovaas Method is not nearly as effective as was originally claimed several decades ago, and it is not effective at all with adolescents like those slated to live in the facility.

Although previous statements from Letson and other OMRDD officials emphasized the warm, “homelike” atmosphere that is supposed to characterize the agency’s residential facilities, including this one, it is now clear that the facility will be an experimental environment, not a “home”.

Residents pressed Letson to say how much the project will cost. They cited evidence that the project would be needlessly expensive, due to the extra costs of flood prevention on the site and of new construction vs. renovation, and as compared to intensive individualized support services that could be provided to the children in their families’ homes. Letson refused to provide specific cost figures for the project. He made two false claims: that OMRDD allocates funds equitably between segregated congregate residential programs and integrated individual supports (see page 4), and that “hundreds of millions” of dollars for new integrated individualized services are available in the Broome DDSO this year. In fact the total available funds for new integrated individualized services in BDS’s service area for the current fiscal year is considerably less than $1 million. Based on past experience with OMRDD projects and services, we estimate that building and operating this facility, which will serve only 8 people, will cost over $2 million in its first year, and about $1.2 million each year thereafter. Meanwhile, BDS has a waiting list of 164 people in Broome County alone who are seeking residential support services—people who won’t be served because OMRDD insists on using most of its funds for expensive segregated congregate residential facilities instead of for less costly integrated services in natural settings.

Letson claimed that OMRDD’s disproportionate expenditures of funds on this facility and three others like it around the state—part of a pilot project—are justified by a so-called “autism epidemic”. Letson made conflicting claims about this; at one point he said that 30% of people have autism, at another he said it was one in 96 people. The federal Center for Disease Control (CDC)’s most recent estimate is that the incidence is one in 110 people.

In fact, there is no scientific consensus on the notion of an “autism epidemic”. Three non-epidemic explanations for the rise in autism diagnoses have some basis in scientific literature.

First, it is possible that autism incidence rates have remained constant but diagnosis occurs more often due to increased scrutiny of children’s mental health.

Second, autism used to be very narrowly defined; as the definition has broadened, it is no wonder that more people are found to have it—just as the incidence of “high blood pressure” rose when the numeric range for that condition was increased by ten points a few years ago. People who used to get the “mental retardation” label are now getting the “autism” label instead. Both of those diagnoses are “developmental disabilities”, but there hasn’t been a comparable increase in the total number of people who have developmental disabilities. In 1994 the CDC said 17% of children had developmental disabilities. However, in 2006, as the alleged “autism epidemic” was picking up steam, the CDC reported that only 13% of children have a developmental disability. Both of these figures are probably inflated; it’s generally accepted that the total percentage of US citizens who have any kind of disability is between 15% and 20%, and that includes elderly people. The incidence of developmental disability among the total population—not just children—has been reported at 1.8%. But, if the total number of children with developmental disabilities has actually decreased during the same period in which the incidence of autism has increased, this would weaken the “epidemic” theory and support the idea that people who once were diagnosed one way are just getting diagnosed a different way today.

And third, the new autism definition also labels as “disorders” things that used to be considered normal variations in behavior. There is a growing body of evidence that indicates that modern child-rearing practices, especially overuse of structured activities and reduced amounts of free playtime, cause behavior problems. Preschool children are naturally highly energetic and they need to release that energy in unstructured play. Scheduling these children’s lives into blocks of formal group activities and pre-arranged “playdates” may be forcing them to release energy in abnormal ways. Today’s parents may have been led to have unrealistic expectations about how much structured activity very young children can tolerate. The children’s natural impatience with and resistance to these activities may wrongly be interpreted as evidence of disabilities.

At the meeting, Letson introduced a BDS psychologist who, he said, was overseeing the project. We at STIC have pointed out that behavioral clinicians have understood for decades that it is harmful to group people with behavioral issues into the same settings, as is the plan for this facility. In groups, people with problematic behaviors imitate each other and escalate the severity of their behaviors. The BDS psychologist attempted to counter this by claiming that children with autism don’t imitate the behavior of others and she would actually be happy if they did. As any parent of a child with autism knows, this is false, and this stunning claim raised serious questions about the knowledge and expertise of the people running this project.

Despite these objections, BDS officials seem to be moving forward, though slowly, with the project. Governor Paterson’s 2010-11 budget proposal includes a “delay” in some OMRDD residential projects “for children” but it’s not clear if that includes the autism pilot project. We’ll continue to cover this story.

Branham, et. al., v Daines

In January four people with traumatic brain injuries (TBI) brought a class-action suit against the NYS Department of Health (DOH), alleging that DOH was violating federal Medicaid law and the Americans with Disabilities Act (ADA) by forcing some TBI Waiver service providers to stop serving them and transfer them to providers of less-than-adequate services.

The gist of this story is that DOH messed up the administration of the TBI waiver program, creating so much confusion that people ended up in danger of going without vital services for some period of time. The situation was apparently so unclear that even the lawyers at Central New York Legal Services who filed the suit didn’t fully understand what had happened.

In 2007, DOH got federal approval to modify the state’s TBI Medicaid Home and Community Support Services waiver to require any provider of the waiver’s “Home and Community Support Services” (HCSS) to be a state-licensed “Home Care Services Agency”. HCSS is a form of personal attendant service. HCSS workers under the TBI waiver can assist people with bathing, dressing, using the toilet, eating, housekeeping and similar tasks. However, unlike “traditional” personal attendants, they can also serve as “companions” and provide supervision to ensure that participants are safe. The classic example of this would be a TBI survivor who has trouble with short-term memory or completing tasks: the HCSS worker would remind the person of the steps to prepare a meal, and to turn off the stove after cooking.

DOH waited until the end of April 2009 to send a letter to notify HCSS providers of these new requirements. The letter said that during the period in which a provider was applying to be licensed, waiver participants getting HCSS services were to be referred to the county Department of Social Services (DSS) to arrange for traditional homecare; once the HCSS provider was licensed, it would resume providing services to the participant.

Apparently some DOH officials responded to providers’ questions about the letter with wrong information. They told them they “didn’t have to worry” about any transition process as long as they had an application for licensure awaiting DOH approval. This advice contradicted the letter, but some providers acted in good faith on the verbal advice. Then a letter went out from DOH in early October informing each DSS, but apparently not the HCSS providers or the Regional Resource Development Centers (RRDCs) that oversee the waiver program, that the deadline for these, presumably mostly temporary, transitions, was December 31, 2009.

Late in December 2009, DOH officials realized they’d made a mistake and began calling TBI RRDCs and telling them that unlicensed providers had to get people transferred to licensed providers by January 31, 2010, and that they could not provide HCSS to them after that date. STIC operates a TBI RRDC; its director got that call at home on New Year’s Eve.

In some rural localities, there are no other licensed provider agencies that could take on these people. Even where licensed providers exist, they can only provide the traditional hands-on attendant services. People on the TBI waiver are, by definition, at risk of institutionalization without the waiver services. Many of them need the safety supervision that only the HCSS program can provide; they face “social admission” to a hospital or nursing home without it. And once they’ve been removed from their homes, they may lose them—by failing to pay rent, for example—and be unable to return to integrated living.

This brouhaha stems from DOH’s original bad decision to require HCSS providers to be licensed homecare agencies. HCSS is a type of personal attendant service; it doesn’t require any greater skill or training than other similar services. NY ’s Consumer Directed Personal Assistance (CDPA) program, and similar programs in other states, proved long ago that licenses and formal training aren’t needed to provide these services effectively and safely. They simply inflate costs. The only beneficiaries are the licensed agencies, which get a higher rate. Traditional homecare agencies have complained to DOH about “unfair competition” from CDPA programs and waiver service providers, and nursing facility operators have complained about empty beds. There is an apparent connection between these complaints and DOH policy decisions that have the effect of pushing people with disabilities out of lower-cost integrated and consumer directed services into more expensive segregated and paternalistic programs (see Paterson’s State Budget: Taking Out a Policy for another example).

The plaintiffs requested injunctive relief to stop the requirement for transitions. At press time, almost a month after the January 31 deadline, we have no word on whether it was granted, or what has become of these people.

DAI v Paterson

On March 1, 2010 a very angry federal District Court judge rejected New York’s proposed remedial plan and ordered the state to move nearly 4300 people with mental illness from adult “homes” into integrated supported living within four years. In his decision, Judge Nicholas Garaufis said, “Rather than complying with the court’s instructions, Defendants have submitted a proposal that scarcely begins to address the violations identified by the court. Worse still, many aspects of their proposal directly contradict the court’s explicit findings of fact made after trial. The court is disappointed and, frankly, incredulous that Defendants sincerely believed this proposal would suffice: their proposed remedy is so egregiously deficient as to arouse suspicion that Defendants submitted the proposal knowing full well that the court would have to reject it, thereby raising a question as to their good faith.”

Adult “homes” are large congregate for-profit institutions ranging in size from 60 to over 300 “beds”. As we’ve reported, the case has been in litigation for over 6 years, and Garaufis had earlier found the state guilty of illegal discrimination under Title II of the ADA and Section 504 of the federal Rehabilitation Act by failing to move 4300 people out of those facilities and into individualized integrated settings. He ordered the state to come up with a plan to remedy the situation. Following that order, the US Department of Justice (DOJ), two associations of adult “home” operators, and the City of New York sought “intervenor” status from the judge. He accepted DOJ’s request but rejected the others. However, the city and the associations were allowed to submit “friend of the court” briefs.

The Paterson Administration proposed a plan to move 1000 people over five years. During that time, adult “home” residents would be informed once a year that they could, perhaps, move to supported living. However, the state continued to insist that everybody in the facilities would be reassessed and only those deemed “appropriate” and sufficiently well-trained, and whose support service needs were “minimal”, would be permitted to move. And the whole plan would be contingent on whether the State Legislature appropriated new funds to support it.

The disability community strongly opposed this plan as completely inadequate. The plaintiff, Disability Advocates, Inc. (DAI) proposed a much more aggressive plan. DOJ heavily criticized Paterson’s plan, and urged the judge to accept all of the points in DAI’s plan instead.

As the judge put it, “Defendants point to the Adult Care Facilities Workgroup Report to argue that ‘only 800 persons across the State could live in independent settings,’ and to demonstrate that 1,000 units of supported housing is actually an extremely generous proposal. Even leaving aside the fact that the court already found that virtually all of Plaintiff’s 4,300 constituents could move to independent settings, this is a bizarre line of argument. Apparently not content merely to disregard the court’s factual findings, Defendants are now renouncing even their own prior factual assertions. Defendants already stipulated to a very different characterization of the Report in the Joint Pretrial Order submitted to the court: ‘A report issued by the Adult Care Facilities Workgroup in October 2002 proposed a timeline for moving at least 6,000 adult home residents with psychiatric disabilities from adult homes into supported housing by March 2009. ’”

“A proposal that affords a remedy to only 23% of those individuals whose civil rights are currently being violated,” the judge said, “is grossly inadequate.” He also pointed out that unless the state’s plan addresses future needs as well as those of the 4300 individuals specified in the lawsuit, the state would continue to violate the civil rights of people with mental disabilities forever. Garaufis said, “Defendants’ proposal would provide additional supported housing should the State in its own discretion make all of the following determinations: (1) there is a ‘reasonable basis to believe’ that the number of residents who are (a) ‘determined to be eligible and clinically appropriate ’ and (b) ‘determined to have completed any required training’ will exceed the number of housing units available; (2) there is state funding available; (3) that state funding is not needed for other demands; and (4) there is no member of another ‘priority population’ who is also seeking supported housing. Plaintiff’s constituents should not hold their breath waiting for the stars to align in this unlikely manner, however.”

In a highly significant paragraph, the judge said, “. Defendants’ eligibility determination proposal contradicts the court’s findings by requiring some residents to complete training before they can become eligible for supported housing. Defendants assert that many residents must undergo training in the use of public transportation, medication and money management, shopping, or cooking before they can be allowed to move to supported housing. The court is very familiar with this argument, having heard it at trial and rejected it as unsupported by the evidence. At trial, witnesses for both sides ‘testified that independent living skills cannot effectively be taught in institutional or congregate settings, because the individuals are unable to practice the skills that are taught.’ Indeed, individuals living in supported housing often receive assistance with the very daily living activities that Defendants insist must be mastered before moving to supported housing.” (emphasis added)

The state’s plan would offer people with mental disabilities seeking residential services in the future an alleged “ choice” between an adult “home” and supported living. Those who choose an adult “home” would be required to sign a waiver stating that they made that choice. But, the judge pointed out, “Since no additional supported housing would be developed for these individuals under Defendants’ proposal, however, the true choice presented would not be between an adult home or supported housing, but rather between entering an adult home or ending up on the street.”

He went on to say, “It is unspeakable that Defendants would propose a remedy that legitimizes, rather than cures, ongoing civil rights violations. Their proposal would force mentally ill individuals to choose between preserving their rights under the ADA and having a place to live. For future adult home residents, this is no remedy at all. In order to rectify the violations found by the court, Defendants must change the way they manage their mental health services so that Plaintiff’s constituents have the choice—a real and meaningful choice—to receive the services to which they are entitled in supported housing instead of an adult home.”

The judge was highly critical of the state’s plan to notify adult “home” residents once a year of their right to live in more integrated settings. “Adult home residents will likely require multiple meetings or discussions, and perhaps even trips to see what supported housing apartments look like, in order to address their specific concerns and help them to overcome their fear of leaving the institution. Defendants’ proposal for a once-a-year ‘educational opportunity ’ cannot hope to address the significant barriers to change found by the court,” he said.

The judge squarely condemned the state for ignoring most of the key points of his original order and attempting to re-argue them after his decision had already been issued. Of great significance, the judge reiterated his finding that integrated supports are less expensive than segregated congregate facilities. In an earlier decision in the case, he had made the point that, if a state already provides services in segregated settings, and also provides some amount of services to meet the same kinds of needs in the most integrated setting, it cannot refuse to expand the integrated services on the grounds that doing so would cost too much or would be a “fundamental alteration” of its programs. In his March decision, Garaufis also restated his contention that no special legislative appropriations are needed to correct this problem.

Throughout the decision, Judge Garaufis voiced suspicions that the state presented its plan not as a genuine attempt to remedy the situation but to preserve all of its arguments for appeal. Nevertheless, he said, “This court will not approve a remedial plan that gives the New York State Legislature permission to decide that the State need not comply with federal law. ”

Prior to the judge’s response to the state’s plan, DAI had proposed its own alternate plan. It would require the state to create at least 1500 scattered-site supported living situations every year for at least three years, and continue until enough are available to meet the needs not only of people now in adult “homes” but of any person with mental health disabilities who needs and requests them in the future. DAI also asked the judge to appoint a monitor to make sure the order is carried out.

With minor modifications, that is exactly what Garaufis did. His order stipulated that the only people with significant mental illness who are not presumed immediately “qualified” for supported living are those with severe dementia, who have physical needs that can’t be met by various Medicaid homecare programs, or who would be an immediate danger to themselves or others. Moreover, the state must contract with supported living providers who will make a real effort to accommodate even members of those groups to the extent practicable. Of particular interest, the judge told the state that it cannot automatically “backfill” adult “home” “beds” as it moves people out of them. Every qualified person with a significant mental illness seeking residential supports, now and in the future, whether they are currently in an adult “home” or not, must first be offered the choice of an immediately available supported living situation. If they are reluctant to accept it, service providers must work with them to be sure they understand their rights and the benefits of integrated living, and to alleviate any fears they may have. In other words, fear of change will not be permitted to control the decision-making process, and the state must continue to work with people who are afraid, in order to get them to accept a better quality of life. The judge will appoint a monitor who has knowledge and experience in the area of integrated residential supports for people with mental disabilities, and the monitor will issue quarterly progress reports to the court, which will retain jurisdiction for at least 4 years, and longer if necessary.

STIC agrees with Judge Garaufis that the state has probably intended to appeal his decision all along. We can see why. The decision is plainly applicable not only to people with mental health disabilities, but to people with any type of disability who are living in institutional settings. The decision clearly indicates that the size of the facility is not the controlling factor for whether a setting is institutional; as the judge has pointed out, segregated “congregate” facilities, without reference to size, are not the best places for people with disabilities to learn skills, have meaningful activities, or develop relationships with other people. They simply are not the “most integrated setting appropriate to the needs ” of most people with disabilities, period. The judge’s order would force the state to offer a real, existing integrated setting to each person with a disability first; only if, after extensive efforts to inform, educate and counsel the person regarding the benefits of integration, the person decisively rejects such a setting, would the state be permitted to segregate the person. Under the judge’s ruling, the state absolutely cannot claim it can’t afford to do this, and would clearly be required to move existing funds out of segregated programs and into integrated supports in order to comply. While doing so, the state would be prohibited from “backfilling” its segregated facilities; it must instead simply close them. The judge is correct in stating that none of this is a “fundamental alteration” of New York State’s disability service programs, because they already do it all to a limited degree for some people. However, his decision flies in the face of the segregationist and paternalistic attitudes of most of the senior officials in the state ’s various disability service agencies, and it threatens the interests of various wealthy facility operators and their lobbyists. It is likely that these people will fight this to the bitter end.

At press time, the Paterson Administration had said only that it was considering whether to appeal. (A few days later Paterson announced that the state would definitely appeal.)

by Sue Ruff

A year ago the National Disability Rights Network (NDRN) released an investigative report on the abusive use of restraint and seclusion in the nation’s schools, at:

www.napas.org/sr/SR-Report.pdf

The child hugging a guinea pig on the cover photo of the 2009 report was a Wisconsin seven-year old who died while being physically restrained. It is very hard to read about the serious harm and in some cases, death, of children at the hands of school personnel. The report highlighted that many parents were not informed when their children were restrained or secluded and that state laws were inadequate, inconsistent, and in many cases absent. While training staff in Positive Behavioral Supports has been helpful for districts that have done it, too few have.

NDRN is the nonprofit membership organization for the nation’s Protection and Advocacy and Client Assistance Programs. Across the nation, P&As are the largest providers of legally based advocacy services for people with disabilities. As their report covered every state and territory, Congress paid attention. Congressman George Miller (D-CA), chair of the House Education and Labor Committee, ordered the Government Accountability Office to do their own nationwide investigation. The GAO report was released last May at the time of federal hearings by the Congressman’s committee, at:

http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml

That report and the public hearings got wide media coverage and the Secretary of Education sent letters out to the states’ Departments of Education last summer. After months of negotiations and work with disability groups; parent groups; and national teacher, school board, and directors of special education organizations, a bi-partisan bill was introduced in the House (HR4247) and a companion bill was introduced in the Senate (S1280). The House bill has been voted out of committee (at this writing, it has thirty-five sponsors). The Senate bill has not yet picked up co-sponsors, but advocacy groups are pushing several Senators to sign on.

NDRN recently released a “year-later” update of School is Not Supposed to Hurt at:

www.ndrn.org/sr/srjan10/Schoo-%20is-Not-Supposed-to-Hurt-(NDRN).pdf

It says, “Over the last year only two states (Minnesota and Missouri) and six departments of education (Maine, Maryland, Nevada, Pennsylvania, and Tennessee) have enacted or improved their laws to prevent and reduce the use of restraint and seclusion in schools. 39% of states still have no laws, policies, or guidelines concerning the use of restraint or seclusion. 87.5% of states and territories still allow prone restraints which restrict breathing. 55% of states do not require or recommend automatic parental notification of restraint or seclusion.”

In other words, not much has changed. This report is a must read for parents and educational professionals. As the harm has continued the P&A lawyers have publicized more cases and stories from their individual states. Pages 26-31 “debunk the myths that perpetuate the use of restraint and seclusion.” The report describes what’s happening in every state and territory and also offers a comparison of the two bills.

The Office of Civil Rights has promised to gather data about the use of restraint and seclusion and has indicated it will investigate complaints that constitute civil rights violations under IDEA or Section 504 of the Rehab Act.

We strongly encourage people to become informed about this issue and get involved. If you aren’t sure how to do that, call Sue Ruff at (607) 724-2111 (voice/TTY).

School needs to be a safe place for both children and staff. Please, get involved.

Two bills of interest to children with developmental and/or mental health disabilities and their families have been introduced in both houses of the NYS Legislature.

One bill (A.8996/S.5986) would change state Education Law to require that all teachers, not just special education teachers, be trained regarding autism. The “fiscal implications” of this bill are “to be determined”; sadly, Governor Paterson, who has proposed a law to end “unfunded mandates” on localities in the state, would probably veto this bill if it passed.

The other bill (A.9075/S.6200) authorizes DOH to conduct “behavioral health wraparound demonstration projects”. Hospitals, medical schools, treatment providers and programs licensed or funded by OMRDD or OMH could apply for grants. They would have to demonstrate models of service-provision to “integrate services provided through [OMRDD, OMH, and DOH] so that children and families can move from crisis or high risk to normalization by providing the right services at the right time and in the right amount.” Medicaid-eligible children who have needed at least one “crisis intervention” in the last 12 months would be eligible for services, which would have to “increase coordination of care, ensure that care is delivered in the most appropriate setting, improve health outcomes and reduce the cost of care.” DOH would be authorized to seek new Medicaid HCBS waivers to do this. However, no money is appropriated for the project. Also, the feds are considering new regulations that would let states apply for HCBS waivers to serve people with disabilities based on functional needs rather than diagnoses. We think it would be better to wait until that program becomes available, and then have a single agency administer such a waiver and all services provided through it. This would produce better accountability and efficiency than any “cross-systems” program ever has.

(from ADAPT)

As the 20th. anniversary of the signing of the Americans with Disabilities Act draws near, the disability community is not busy celebrating because we are literally in a fight for our lives and our most basic freedoms.

Eleven years ago, in the Olmstead decision, the Supreme Court said that Americans with disabilities have the right to live in the most integrated setting. Yet today, states are responding to budget shortfalls by drastically cutting home and community-based services. These draconian cuts are forcing seniors and people with disabilities into nursing facilities and other institutional settings because they don’t have the services they need to remain independent. As states cut vital services, the federal government, which is charged with protecting our civil rights and enforcing the law, is simply standing by silent while Americans with disabilities have their most basic freedoms taken away by the states. The disability community cannot sit by as our freedom is negotiated away in back room budget deals. We must take action!

Defending Our Freedom is a three-prong national campaign initiated by ADAPT to organize the disability community to:

• Demand that the Obama Administration fulfill its duty to aggressively protect the civil rights of disabled Americans and enforce the Americans with Disabilities Act/Olmstead decision;
• File complaints with the US Department of Health and Human Services Office for Civil Rights (HHS/OCR) and the US Department of Justice (DOJ) that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced as well as complaints that document the state policies and budget cuts that violate our rights; and
• Document the disability community’s efforts to fight back against state cuts so that we can learn from each other ’s efforts, rally others to join our fight, and hold public officials accountable when they do not support our freedom.

I. Defending Our Freedom: Demanding action by the Obama Administration The federal government is responsible for enforcing federal law and assuring that states comply with the ADA/Olmstead decision. ADAPT is demanding that the federal government affirmatively and aggressively enforce the Olmstead decision. To do this, HHS/OCR must:

1. Accept, investigate and resolve individual and systemic complaints which document state policies and budget cuts that threaten the freedom of Americans with disabilities;
2. Develop specific benchmarks/criteria for assessing state compliance with the Olmstead decision, assess the states and publicly release this assessment on an annual basis;
3. Conduct regular, ongoing compliance reviews of states for compliance with the Olmstead decision, and provide technical assistance to states to help them understand how they can voluntarily comply with the law;
4. Work with DOJ to develop most integrated setting criteria for determining when DOJ will step in and affirmatively enforce the Olmstead decision;
5. With the Centers for Medicare and Medicaid Services (CMS), develop guidance for the states on the Olmstead decision that requires state Medicaid programs to comply with the most integrated setting requirement of the ADA, including a model Olmstead Plan that assures the freedom of Americans with disabilities who want to live in the most integrated setting;
6. With CMS, review state submissions for modifying their Medicaid State Plan and HCBS waiver services for the impact that these changes will have on the state’s ability to comply with the Olmstead decision so that those changes which limit the freedom of Americans with disabilities are not approved by CMS;
7. With CMS, modify Section Q of the Minimum Data Set so that people who indicate they want to return to community living are actively assisted to do so;
8. Publicly report on the progress that has been made.

Take Action: ADAPT is urging organizations across the country to sign on in support of these demands. If your organization would like to support this campaign, email DOF.signon@gmail.com.

If you go to the ADAPT page for the campaign (www.adapt.org/adapt-campaign.html), you can see the list of organizations that have signed on in support of this campaign.

II. Defending Our Freedom: Filing complaints to protect our freedom

HHS/OCR and DOJ are charged with protecting the civil rights of Americans with disabilities who want to live in the most integrated setting. Although they are able to affirmatively enforce the law without specific complaints, these agencies typically take action only when complaints are filed. We need to file complaints that document the violation of rights of individuals who have been forced into institutional settings, denied community services, or have had their community services reduced. We must also file complaints that document the state policies and budget cuts that steal the freedom to which we are entitled under the Olmstead decision.

Take Action: ADAPT has prepared a form you can download and fax to us toll free at (888) 324-0787. We will forward your complaint to HHS/OCR, the appropriate HHS/OCR regional office, and DOJ. If you choose to file your complaint yourself, please notify us at DOF.complaint@gmail.com that you have filed a complaint and, if possible, send us a copy.

III. Defending Our Freedom: Fighting back and sharing our stories

Even though there are different battles in individual states, we are fighting the same fight. To strengthen these efforts across the country, our campaign will collect personal and state stories about the effects of budget cuts and the efforts to fight back against them. ADAPT has created a website:

(www.defendingourfreedom2010.blogspot.com)

where we can post information and pictures of your advocacy. This will create a public record of the disability community's efforts to stop cuts and hopefully inspire others across the country to speak up and speak out, too. State advocates can also submit individual calls to action so that we can support each other’s efforts.

Take Action: Send submissions to defendingourfreedom@gmail.com. And remember to keep up on what groups are doing by reading the blog:

(www.defendingourfreedom2010.blogspot.com.

Update

About two weeks after ADAPT began this campaign, two successes were achieved. The Democratic National Committee issued a resolution calling for “efforts to vigorously enforce the Supreme Court’s Olmstead decision.” And HHS/OCR agreed to meet with ADAPT representatives in April. ADAPT will use this meeting to educate HHS officials, who run the federal Medicaid program, about the institutional bias in Medicaid law and regulations.

(abridged, from NYAIL)

The New York Association on Independent Living (NYAIL) represents Independent Living Centers (ILCs) and the people with disabilities they serve. ILCs are cross-disability, consumer-controlled, community-based not-for-profit organizations that provide services such as advocacy, peer counseling, independent living skills training, personal attendants, employment, and more to empower people with disabilities to live independent, fully integrated lives in their communities.

As NY strives to cope with historic budget shortfalls, NYAIL continues to advocate for systemic reforms to ensure that services and supports for people with disabilities are provided in the most integrated setting, as required by the ADA and the US Supreme Court’s Olmstead decision.

Substantial cost savings will result from shifting State funding from institutional and other segregated settings to fully integrated services and supports in the community. For example, in 2008, 52,229 individuals were enrolled in segregated employment programs through OMRDD alone, including sheltered workshops, at a total cost to the state of more than $1 billion. The cost per person in these segregated programs is $21,309 compared to $5,291 per person in integrated supported employment programs.

As required by NY’s Most Integrated Setting Coordinating Council (MISCC) legislation, which sought to ensure the state complies with the Olmstead decision, NY must examine all service systems and funding streams, looking across state agency and other artificial “silos,” to shift state funding to integrated programs from much more costly institutional and segregated services, to both comply with federal law and decrease costs to State taxpayers.

2010 BUDGET PRIORITIES

Independent Living Centers

Adequately fund Independent Living Centers. Restore $1.2 million in 2008-09 SFY ILC funding cuts and increase ILC funding to generate additional savings to the state and provide critical services to people with disabilities.

Increasing funding for ILCs carries no cost to the state because of the substantial savings generated by these essential services. In fact, not adequately funding ILCs costs the state money in lost savings. ILCs have conservatively saved NY taxpayers more than $9 in institutionalization costs for every state dollar invested in ILCs, for a net savings of more than $110 million each year as a result of avoided institutional care for people with disabilities (VESID, 2007). NYAIL’s 2008 statewide needs assessment outlines significant gaps in services and underserved areas of the state, resulting in substantial funding inequities and lost state savings (Center for Government Research, 2008). Moreover, a recent national study of ILCs, funded by the federal Centers for Medicare and Medicaid Services, supports the critical role of ILCs in helping states comply with federal law and save costs: Centers have proven to be effective partners in helping government comply with the ADA and save money by supporting individuals with disabilities to live in less-costly community settings (Rutgers Center for State Health Policy, June 2008).

RESPONSE TO 2010-11 EXECUTIVE BUDGET PROPOSALS

Oppose proposal to cap personal care services at 12 hours a day, forcing thousands of New Yorkers with disabilities to shift to different service systems that will limit their control over their own services, and will force some into unwanted institutionalization.

Support funding for rental/housing subsidies for participants in the Nursing Facility Transition and Diversion (NFTD) and Traumatic Brain Injury (TBI) Medicaid waiver programs.

Oppose the increased assessment to 0.7% on total home and personal care provider revenues and the elimination of the 2010 home and personal care trend factor, both of which would significantly affect providers, including many ILCs providing CDPAP services, already struggling to support people in the community.

NYAIL is concerned about the proposal to implement a new episodic reimbursement methodology for homecare in 2012, which seems to create a disincentive for homecare agencies to serve people with significant disabilities and threatens to curtail access to 24 hour care. NYAIL needs more information on this proposal.

Support the county long term care financing demonstration program which will provide up to five counties with incentives to reduce beds and ultimately close their county nursing facilities and redirect the funds toward increasing community based services.

Oppose Early Intervention proposals that decrease Medicaid rates for home-based visits and establish parental fees.

Support increased funding for the State Low Income Housing Tax Credit (SLIHTC).

Oppose OMRDD’s community residential program initiatives that shift individuals from large institutions to smaller institutions, such as group homes.

Oppose elimination of the 2010 Human Services Cost of Living Adjustment which would directly affect direct care workers employed through human service programs, including OMRDD, OMH, OASAS, DOH, SOFA, and OCFS.

BUDGET RECOMMENDATIONS

Expand facilitated enrollment for Medicaid to SSI-related applicants through community-based disability advocacy organizations.

Eliminate the asset test for the SSI population applying for Medicaid. Extend 12-months continuous Medicaid coverage to people needing long term care.

Allow co-location of mental health services in community-based health care settings.

DISABILITY COMMUNITY PROPOSALS

In November 2009, in response to Governor Paterson’s Deficit Reduction Plan (DRP), NYAIL, the Center for Disability Rights and the Consumer Directed Personal Assistance Association of New York State (CDPAANYS), called on the Governor and the Legislature to implement several long-term care cost-saving proposals to avoid massive Medicaid cuts. The recommended policy changes would increase the independence and community integration of seniors and people with disabilities while simultaneously saving the state upwards of $287 million. The proposals are summarized below. The full proposal is available at www.ilny.org.

1. Increase use of the Nursing Facility Transition and Diversion (NFTD) Waiver to transition people from nursing facility placement to community living: Saves $85.7 million.
2. Divert people from nursing facility placement using the NFTD Waiver: Saves $84.2 million.
3. Shift people currently using Certified Home Health Care to the less costly Consumer Directed Personal Assistance (CDPA) program: Saves $43.4 million.
4. Shift people currently using traditional Personal Care to less costly CDPA: Saves $26.6 million.
5. Expand the pool of direct care workers to match the federal rules for family caregiving to promote the use of more cost-effective services: Saves $39.4 million.
6. Use assistive technology to contain costs: Saves $7.7 million.

Just about a year ago, US Senator Tom Harkin (D-IA), who chairs the Senate’s Health, Education, Labor and Pensions (HELP) Committee, held a public hearing on the issue of sheltered employment and payment of subminimum wages to people with disabilities. The hearing revealed that it is common for people with disabilities in sheltered workshops and other segregated congregate employment programs to be underpaid. Federal law permits subminimum wages to be paid to people with disabilities who, due to their disability, are unable to achieve rates of production similar to nondisabled people. Evidence presented at the hearing, however, documented disability rights activists’ long-held contentions that most people with disabilities can be as productive as nondisabled people given the right jobs and workplace supports, and that large numbers of highly productive people with disabilities are getting subminimum wages in violation of the law but federal enforcement efforts are lax.

After the hearing Harkin said he planned to introduce significant changes to the Workforce Investment Act (WIA) to address these problems, when it comes up for reauthorization in 2010. WIA is the successor to the federal Rehabilitation Act. The Rehab Act funds supported employment and some Centers for Independent Living (STIC gets money from both pots), and it contains the famous “Section 504”, which outlaws discrimination on the basis of disability by any entity that gets federal funds. WIA contains the entire Rehab Act along with the legislation governing the “Ticket to Work” program and the so-called “one-stop” employment centers. Although it is not clear that Congress will actually get the reauthorization done this year, Harkin and others are pursuing the issue in other ways.

According to information provided by the National Disability Institute (NDI) this January, “movement has increased among the Senate HELP Committee to push for changes to section 14(c) of the Fair Labor Standards Act, which allows employers to pay individuals with significant disabilities who meet specific criteria under the national minimum wage for work performed.”

According to the US Department of Labor (DOL), the federal government fined only 3 out of 797 employers that violated federal labor laws while paying subminimum wages to workers with disabilities over a five-year period.

Senator Harkin told the Des Moines Register in January that there is “no question ” that the law does not give people with disabilities “fair employment opportunities that are sufficiently policed to prevent exploitation.”

NDI says the Senate HELP Committee is considering ways to reduce the use of section 14(c), “including a possible 5-10 year phase-out of the use of subminimum wage altogether, and possibly an immediate prohibition of the practice among youth with significant disabilities who are transitioning out of the educational system into adulthood.”

DOL reported that the “797 cases, handled between 2003 and 2008, involved almost $5 million in unpaid wages owed to more than 18,500 workers. All but eight of the cases resulted in an order to pay back wages to the workers. In the three cases that resulted in penalties, the fines totaled $8,360.”

NDI reported that, “Nationally, the number of enforcement actions in response to alleged violations of wage-and-hour laws has dropped from 47,000 in 1997 to 30,000 in 2007. In 2009, the Government Accountability Office alleged that the Department of Labor took a year or more to respond to some workers’ complaints of unpaid wages and lied to others about efforts to resolve their complaints.”

No doubt when the workshop operators get wind of this, Senator Harkin will be under the gun from their lobbyists. We’ll keep you informed.

In February President Obama tried to restart the stalled effort to reform health care by releasing his own plan. We were not able to review the plan in detail. Obama claims it improves upon the bills passed by Congress by providing the states with more money to pay for expanded Medicaid coverage; closing the Medicare Part D “donut hole”; and raising the value threshold for so-called “Cadillac” insurance plans that will be taxed, and delaying implementation of the tax until 2018. It also drops Senator Ben Nelson (D-NE)’s widely-criticized free Medicaid special provision for Nebraska.

Obama’s plan does include the “Community First Choice” (CFC) option, which would create a new optional Medicaid State Plan service to provide highly flexible community-based services and supports to people with disabilities. As we ’ve reported, CFC is not much different from an option provided to states by Congress in 2005, and which no state has adopted so far, though CFC does include some funding incentives that weren’t in the 2005 law. As prospects for passage of a health care bill dimmed this winter, some disability activists began pushing the Community Choice Act (CCA) again. Unlike CFC, CCA would require states to offer a similar option to anyone who is eligible for Medicaid and for nursing facility, ICF/MR, or psychiatric hospital services.

There is no “public option” in Obama’s plan. It is not clear that the higher threshold for “Cadillac ” plans would really prevent people with moderate incomes from being taxed in states where health insurance is more expensive. Obama’s plan would require most people who can’t get insurance from employers or government programs to buy it, and it is still not clear that promised tax cuts and subsidies would cover the full cost for those people. And it is not clear that proposed cuts to Medicare rates for homecare would not reduce availability of that service to some people.

STIC continues to urge people with disabilities to be very cautious about endorsing any existing federal health care reform bill.

by Linda Giese

If you have a disability that affects your ability to walk from a car to your destination, and you depend on family, friends and aides to drive you around, you can get a hang-tag—a permit to park in a disabled parking space. It doesn’t matter if you don’t own a car or don’t have a driver’s license. Once you have it, the tag can be hung from the rear view mirror of any vehicle that is being used to transport you. Unlike disabled license plates that are issued by the Department of Motor Vehicles, disabled parking permits are issued by the town clerk or city clerk where you live, and the permit stays with the disabled person, not with the car.

You will need a DMV Form MV-664.1, a simple one-page application, filled out by you and your doctor. This can be obtained online at www.nysdvm.com. If you don’t have a driver’s license, you will also need some form of ID and it is a good idea to call your city or town clerk first to find out what form of ID they will accept. Like all bureaucratic procedures, the requirements may differ depending on who is reading the rules. You can also ask if you have to come in person to get the permit. The clerk may also waive the required doctor’s statement if you have an obvious physical disability, but, then of course, you would have to go to the clerk’s office in person.

If you don’t already have the ID that your clerk’s office requires, obtaining a non-driver ID may be the most challenging part of the process. If you go to the State Office Building in Binghamton, it may be physically challenging, or impossible, to get from the parking ramp to the front door of the building. A better choice is the DMV office on Clinton Street, or the Sheriff’s office behind the Community College; both are accessible.

You have to bring specific identification with you to get a non-driver ID. Because identity theft is so prevalent, you may need multiple documents that prove your birth date, citizenship and address. If you want to talk to a person to confirm ahead of time what you need to bring to get a non-driver ID, you can call the Binghamton DMV at 778-2337. (A recording will answer; the magic number to press to talk to a person is “6” not “0”). The Sheriff’s staff will answer at 778-2444 and tell you what documents you need to bring to get a Sheriff’s ID. (The State DMV no longer has an 800 number; it is now a toll call to Albany.)

You will see that the form allows you to apply for a “Temporary” or “Permanent” parking permit. This is somewhat confusing; those words describe your disability, not the permit. Both kinds of parking permits have expiration dates and have to be renewed periodically.

Once you have it, the disabled parking permit can be hung from the rearview mirror of any car in which you are traveling, while the car is parked in a reserved-for-the-disabled space. Don’t let any of your nondisabled friends use your permit to park illegally in disabled parking; they can be fined and your permit can be revoked. You did lots of paperwork to get it; don't lose it.

Beginning January 1, 2010, changes to federal Medicare law will make it easier for some people to qualify for Extra Help with their Medicare prescription drug plan costs. Under the Medicare Improvements for Patients and Providers Act, the feds:

• will no longer count as a resource any life insurance policy; and
• will no longer count as income the help you receive regularly from someone else to pay household expenses such as food, mortgage, rent, heating fuel or gas, electricity, water, and property taxes.

(from a DOH press release)

We are proud to announce that STIC is one of nine agencies that will share $1.15 million in grants through the Department of Health’s Money Follows the Person demonstration project. The awards were made following a competitive process.

The funding is part of New York State’s Money Follows the Person demonstration program approved by the federal Centers for Medicare and Medicaid Services (CMS). The purpose of the project is to identify and conduct outreach to select nursing home residents to provide them with objective information about home and community-based options, and to work with nursing home discharge planners to assist nursing home residents who wish to transition into the community.

“This project supports New York State’s efforts to restructure health care priorities by shifting away from institutionally based care to a person-centered system,” said DOH Commissioner Richard Daines. “The Money Follows the Person project ensures that the state’s nursing home residents have the information they need to make choices about where they receive care. The success of this program will help ensure that people who need long-term care support will learn about their options, and choose the least-restricted setting to receive care services. This involves evaluation of a person ’s cognitive, medical, nutritional, behavioral and emotional state of being and intense work with each resident to help them determine what setting would support them best.”

The nine awardees and award amounts are:

$85,000 to Southern Adirondack Independent Living Center (Glens Falls) to serve Clinton, Essex, Franklin, Fulton, Hamilton, Montgomery, Saratoga, Warren and Washington counties.

$85,000 to Independent Living Center of the Hudson Valley (Hudson) to serve Albany, Columbia, Greene, Rensselaer, Schenectady and Schoharie counties.

$100,000 to STIC to serve Allegany, Broome, Cattaraugus, Cayuga, Chemung, Chenango, Cortland, Delaware, Otsego, Schuyler, Steuben, Tioga and Tompkins counties.

$100,000 to Western New York Independent Living Inc. (Buffalo) to serve Chautauqua, Erie, Niagara, Orleans and Wyoming counties.

$165,000 to Self Initiated Living Options, Inc. to serve Nassau and Suffolk counties.

$165,000 to Westchester Independent Living Center to serve Dutchess, Orange, Putnam, Rockland, Sullivan, Ulster and Westchester counties.

$249,973 to Saint Vincent’s Catholic Medical Centers Home Health Agency to serve the Bronx, Brooklyn, Manhattan, Queens and Staten Island.

$100,000 to Center for Disability Rights (Rochester) to serve Genesee, Livingston, Monroe, Ontario, Seneca, Wayne and Yates counties.

$100,000 to ARISE Child and Family Service, Inc. (Syracuse) to serve Herkimer, Jefferson, Lewis, Madison, Oneida, Onondaga, Oswego and St. Lawrence counties.

Kendrick Kemp

I’m the new MSW intern working with Susan Link and Charlie Kramer. I completed my undergraduate in social work at Syracuse University, and I’ve always worked in the human services field. I was one of forty people chosen for the New York State Partners in Policymaking Program, the purpose of which is to build partnerships with policymakers to better the futures of people with developmental disabilities. When I was presented with the opportunity to be in the Binghamton University MSW program, I jumped at it. I want to give back to my culture by studying mental health, because this phenomenon is an extremely important aspect of our lives.

Besides university and life experiences, my family, ability to know myself, and cultural experiences helped create my disciplines. One of the experiences that really changed my life was when I was 21 and I had a stroke; I couldn’t walk or talk so I had to rely on others. Before the stroke I was a top athlete in multiple sports, so this stroke was like pulling a magic carpet out from under me. I relied on my abilities, my intelligence, and my spiritual upbringing to mold me back to a person, which I’m still doing. It’s good to be giving back to STIC; I have much gratitude for this internship, and I hope I will learn and experience a lot from you all.

Stacy Nickerson

I’m very happy to say that on January 19, 2010 I became part of the Southern Tier Independence Center team. I will be working part-time as a Regional Resource Development Specialist with the TBI Waiver program and part-time with the new Money Follows the Person program.

In the last seven years I worked with the Southern Tier AIDS Program. My job roles there included Case Manager, Medical Advocate and Assistant Director of Client Services.

I obtained my Associates Degree in nursing from Broome Community College and a Bachelor of Science Degree in Human Services from Empire State College. Over the last twenty five years I have worked in mental health, substance abuse, HIV/AIDS, TBI and long-term care.

Coming to STIC is a great opportunity for me and I feel honored to be a part of this organization. Thanks to everyone who has made my transition an excellent experience!

Peg Schadt

Thanks to all my friends and acquaintances at STIC for the warm welcome. I am the new Community Transition Facilitator, and will be working with the Money Follows the Person program.

I have many years of advocacy experience, working with my son, Matt, and his brothers and sister. Their unique learning styles have made me aware of the many community services and supports available.

I like to fish and camp and always spend one week every year with my family, fishing at Black Lake.

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