There’s No Place Like Home

by Maria Dibble

This is the story of my elderly mother’s move from Florida to Binghamton, and her ugly passage through nursing homes on the way. It’s a story that could happen to each of us—and for Baby Boomers, it could happen very soon. This is not only about your aging parents. It’s about you.

I will name no people or facilities, but the story is true. Some of it is graphic and may be disturbing.

Two days after Christmas, while visiting my aunt in Brooklyn, Mom fell and broke her arm. She also lost the ability to walk, even with the cane or walker she’d previously used.

After a brief hospital stay, because her elderly sister couldn’t give her the help she needed, Mom was sent to Nursing Home X in Brooklyn for in-patient rehab.

Even after the preliminary medical exam at X, it wasn’t clear what she was getting rehab for, because there was no firm diagnosis. She couldn’t get it for her arm until the splint was removed in 4 to 6 weeks. Her inability to walk could have been due to a stroke (she’d already had a few) or arthritis (which already caused pain and weakness in some joints). It was clear that Medicare would pay for rehab though, so rehab she would get.

And thus my mom began her journey to becoming a non-person. What do I mean by that? Well, the treatment she received was worse than some people would give to an animal.

X cost $600 a day, yet patients weren’t allowed to stay in their own rooms when not in PT or OT. Instead, they corralled everyone in what Mom called “the Green Room”, where they sat around watching TV. Many of the patients had dementia and it was very uncomfortable for my mom, who doesn’t. She asked to go to her room several times. The first few times they said “no”; then they just ignored her. I’m guessing this was because it took only one aide to keep an eye on everyone if they were all forced to congregate in one place. It was cheaper for the nursing home and simpler for the staff. No one cared what the patients wanted. It was a scene out of One Flew over the Cuckoo’s Nest.

Mom needed help in the bathroom because she couldn’t transfer from her wheelchair, pull down her pants or wipe herself. She was handled very roughly, causing more pain to her arm. They pulled it, twisted it, did whatever was fastest, ignoring her protests and, sometimes, tears. They often didn’t clean her well, and if she objected they’d do it again roughly. They used wet wipes and got annoyed, and often ignored her, if she asked to be dried off so she wouldn’t be sitting in wet clothes. She got the same rough handling when they dressed her, pulling and pushing her arms to get them into her sleeves, even though this, or the resultant digging of her arm brace into her arm, caused great pain.

I complained to the social worker and the nurse on the floor. Mom’s treatment got better for a day, then it got even worse. The staff began doing petty little things out of spite. For example, Mom loves ice cream, and one day asked for some in the Green Room. Several patients said they’d like some too. A couple hours later, an aide brought everyone ice cream except Mom. Mom asked where hers was and the aide said, “You’re not on the approved list.” When Mom asked what list, she ignored her and left, over the protests of patients who thought it unfair that the one who’d made the request didn’t get any.

This may sound like a small thing. Big deal; she didn’t get ice cream. But remember, this is a person who all of a sudden couldn’t walk or use one arm, couldn’t use the toilet or wipe herself alone, and was facing the prospect of losing her home and friends in Florida.

This wasn’t the first time Mom had fallen. Though we didn’t yet have a diagnosis, she obviously couldn’t move around alone. She could use a wheelchair, but would never have the upper body strength to get in and out of it herself. This meant she’d need homecare. But Florida, which prides itself on having no income tax, therefore also has almost no homecare services. Staying in FL would mean life in a nursing home.

Mom’s world had changed dramatically in a matter of minutes, and now she was being treated without dignity or respect in a place where her needs and wishes were secondary to staff convenience. My heart would break when she’d call me crying; she felt helpless and hopeless, and afraid of retaliation if she complained. Then came the last straw.

Mom had to use the bathroom. Usually she had to wait 45 to 90 minutes after asking before they helped her to the toilet; this is typical in nursing homes due to staff shortages. By the time they got to her, it was almost time for PT so they rushed her. Mom hadn’t had a bowel movement in several days. She was very uncomfortable, and the long period of constipation made it worse. She had begun to go but was very nervous because they kept hurrying her. Finally an impatient aide said, in a nasty tone, “What’s wrong? You’re going to miss PT.” Mom said she was still going and the feces was only half out of her. The aide put on a glove, yanked Mom roughly forward, and pulled the extruded portion out of her rectum, leaving the rest behind. Mom felt she had no choice but to go to PT. But she was so upset that she couldn’t stop crying. The PT at least had some compassion and took her to the bathroom and told her to take as long as she needed.

I can’t tell you how outraged I was when I heard this story. I begged Mom to let me report it, but she was afraid of retribution. I finally convinced her to move to a nursing home near me and I promised I’d find her better rehab as well.

Although this local facility cost “only” $300 a day, the treatment was much friendlier and more respectful. There were several aides whom Mom came to like very much. The PT/OT department was excellent. And Mom could stay in her room when not in therapy.

But even this nursing home can’t help but be an institution, with all that implies. Don’t let the word “home” deceive you. Nursing homes are depersonalizing, regimented, and boring to boot. And price is obviously no indicator of quality.

This one was short-staffed and had high staff turnover because, I imagine, the pay is low. Patients wait a long time for help in the bathroom. Another thing common to nursing homes is one shower a week, at best. The in-house doctors in both places were lackadaisical. I had to push hard to get Mom examined by a specialist who ordered an MRI and other tests and finally produced a diagnosis (severe untreatable arthritis of the spine). And money mysteriously disappeared out of Mom’s purse while she was there.

Although she was treated better here, she was traumatized by the degradation at X. She felt totally out of control of her life–and she was. She was afraid, quiet, depressed and withdrawn. That was until staff at STIC started to work with her and draw her out.

I have new respect for service coordinators who help others to leave institutions, because I’ve spent the last three months being one for my mom. My husband and I spent much of every weekend filling out applications for supplemental health insurance, Medicare Part D, various local programs, Medicaid, and housing. Trying to find accessible subsidized housing is the worst. Most places have a 3-to-4-year waiting list.

Mom just got lucky. After many applications for programs and services, and piecing together homecare from three different sources, she now has her own apartment. I’m so proud of her. She has lost the ability to walk, her home, and her friends, not to mention a lot more sunshine, but she is starting to make a life for herself again. She has wonderful aides and she’s getting the hang of using her power chair.

And what is it costing? About $100 a day. As we’ve said, it costs between 3 to 5 times less to serve a person in her own home than in an institution.

This story has a happy ending. But there are thousands of people in nursing homes with no friends, advocates, or family. Most have become wallflowers generating money for the facilities while waiting to die, with no one to mourn when they pass. If your loved one is in, or about to enter, a nursing home, please visit, watch, listen and get involved. Ask STIC or your nearest Independent Living Center about services to help them stay in, or return to, their own home. There are several programs. All require Medicaid eligibility, but if you’re in a nursing home long enough, you’ll most assuredly need Medicaid.

We’re lucky to live in a relatively service-rich state. Even in NY, though, it’s hard to schedule aides reliably or find accessible affordable housing. Mom’s apartment is nice but it’s tiny and not fully accessible to a person who can’t get out of bed on her own. She’s had to give up many treasured belongings. My husband and I have had to be backup aides ourselves when workers haven’t shown up. There is much more to do before the Baby Boomers can be assured a life of dignity and safety in their own homes.

If you’re getting older yourself: Do you really want to end up with one shower a week, in diapers because they won’t take you to the bathroom often enough, and with nothing to do but watch TV in a place where it’s easy to be treated badly and hard to get anyone to listen? The time to get involved and ensure that doesn’t happen to you is now. Contact STIC about that too.

July 2012


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An Injustice Center?

In the wake of the Federal Department of Health and Human Services (HHS) challenge to the credibility of the NYS Commission on Quality of Care (CQC) in January (see AccessAbility Spring 2012), Clarence Sundram’s leaked report on abuse and neglect of people with disabilities (see Sundram Conundrum) in March, and April’s embarrassing OPWDD whistleblower kerfuffle (see Scandal and Its Discontents), in May, Governor Cuomo, to great fanfare, announced his response.

He proposed to dismantle CQC and create a new “Justice Center for the Protection of People with Special Needs” to replace it. The Center would be a new state agency under the Governor, just like CQC, and would take over nearly all of CQC’s functions. In addition, it would:

  • Have authority to collect and investigate reports of incidents of abuse and neglect in facilities or programs operated by OPWDD, OASAS, and the Office of Child and Family Services, and in facilities operated by subcontractors of those agencies. This authority would also extend to residential schools operated by SED; to most OMH operated or funded programs, with the exception of “Secure Treatment Centers” and programs in correctional facilities; and to adult “homes” overseen by DOH. It would not cover nursing facilities.

  • Establish a “special prosecutor” who would have concurrent authority with local prosecutors to charge workers with criminal abuse or neglect.

  • Transfer personnel and funds from those agencies to the Center to provide investigative staff.
  • Standardize definitions of abuse and neglect across all of the affected agencies.

  • Establish a central “do not hire” registry of workers who have committed serious acts of abuse or neglect that would be used by all of the affected agencies.

  • Establish a single “code of conduct”, and some aspects of employee discipline procedures, for all workers in the affected agencies.

  • Establish a central “hotline” to which all serious incidents must be reported, including possible crimes; the hotline would decide whether incidents should be reported to law enforcement.

  • Issue periodic public reports on trends and investigations.

The federally-funded “Protection and Advocacy” programs operated by CQC were to be temporarily transferred to the Center, but, Cuomo claimed, a not-for-profit agency would eventually take those over.

The bill implements most, but not all, of the recommendations in the Sundram report, which was officially released along with the bill.

Cuomo got a lot of initial favorable publicity for this plan. Various media called it “historic”. His bill passed without discussion or alteration in the state Senate. Then objections like these began to be heard:

The bill doesn’t cover nursing facilities or “forensic” OMH programs. Sundram said DOH was doing a good enough job of monitoring and responding to issues in nursing homes. Advocates felt otherwise and noted that DOH lets nursing facilities investigate themselves and downplay complaints from residents and families, and that the federal Centers for Medicare and Medicaid Services (CMS) has criticized DOH performance. We don’t know why OMH forensic programs were omitted, but they shouldn’t be, because serious incidents, including suicides, occur in them.

The bill doesn’t ensure that state employees convicted of criminal abuse or neglect in court, much less those who deliberately abuse or neglect people but have good defense lawyers, will be fired. The bill enshrines collective bargaining agreements that prevent such firings.

One reason for this new Center is that investigators at OPWDD, OMH, DOH and OCFS didn’t do a good job of investigating incidents and devising corrective plans in the past. Transferring the people responsible for these failures to a new agency is not likely to produce better oversight. And the bill also says that these agencies will continue to have primary responsibility for some investigations without providing criteria for determining who investigates what.

The bill does not clearly state that despite the requirement to immediately report incidents to the hotline, witnesses to crimes should also report them directly to the police.

The bill does not implement Sundram’s most important recommendation, to make the use of segregated congregate facilities “the last resort”.

As the criticisms mounted, silence initially fell over the Assembly. At press time the bill had not been introduced there. STIC staff presented our concerns to various legislators, who responded with real interest. We learned that Assembly leaders had been negotiating with the Governor’s office on changes to the bill.

Eventually, Speaker Sheldon Silver said that a bill would pass, but not in its original form, and he cited concerns that the proposed Center was not sufficiently independent of state government. “Right now we have internal looks. I think there has to be some way in which somebody can be heard other than an employee of the State of New York,” he said.

It also emerged that Cuomo had announced his bill without first notifying CQC Chair Roger Bearden. Bearden, whom Cuomo appointed in March 2011 to replace fired Chair Jane Lynch after the OPWDD scandals broke, had been struggling to reform the agency in the face of a tiny budget, regulations that wasted resources on investigating minor errors instead of focusing them on serious problems, and a resistant agency “culture”. In the media frenzy surrounding the April McDonald roundtable, it was reported that Bearden had responded to these issues, and to the HHS findings, with a plan recommending that “most” of the CQC’s responsibilities be turned over to a not-for-profit agency that would be independent from the state. Cuomo’s bill turned that recommendation on its head, retaining nearly all CQC functions in the new state agency.

We support some of the bill’s proposals, including the standardized definitions of abuse and neglect and incident reporting requirements, the do-not-hire registry, the code of conduct, and the periodic public reports.

But this is far from enough to combat an entrenched system that fosters abuse and neglect and protects the perpetrators. Here is what we actually need:

  1. Current CQC functions unrelated to investigating, monitoring, and reporting violations of people with disabilities’ civil rights, or reports of abuse or neglect, or improving enforcement, should be assigned to a new Office of Disability Services. This would include the Interagency Coordinating Council for Services to Persons who are Deaf, Deaf-Blind, or Hard of Hearing, and the TRAID project.

  2. No agency should investigate itself. All investigative, monitoring, and reporting functions, as well as federal P&A programs, must be assigned to an independent not-for-profit agency.

  3. Nursing facilities and OMH forensic programs must be under the new agency’s jurisdiction.

  4. Funding that supported investigative functions at state agencies should be transferred to the new agency. However, persons employed by those state agencies may only be hired by the new agency after an investigation determines that they were not culpable in covering up abuse and neglect in their old jobs.

  5. Legislation must be introduced to prohibit NY State from entering into any collective bargaining agreement that keeps the state from immediately firing employees who are convicted of criminal abuse or neglect, or who have clearly deliberately committed acts of abuse or neglect without being convicted. This legislation should take effect as current union contracts expire.

  6. The legislation must clearly state that in addition to reporting incidents to a hotline, any witness to a potential crime must immediately report it to the police.

  7. Legislation must require police to make an arrest and conduct an investigation when a victim of abuse files a complaint under circumstances that suggest probable cause. Precedent for this exists in domestic violence laws on the books.

  8. Legislation must modify the rules of evidence in criminal cases involving abuse or neglect of people who cannot clearly communicate, to provide that victim testimony is not required and that a combination of eyewitness testimony and/or clear and convincing material evidence is sufficient for conviction in such cases. Prosecutors in possession of such evidence must be required to bring the case to court.

  9. Separate legislation must implement Clarence Sundram’s “segregation as last resort” recommendation. This legislation should establish a New York State policy that direct operation by the state, or by the state’s subcontractors, of segregated congregate facilities for people with disabilities will be a last resort among all of the agencies that provide or fund disability services. The legislation should specify that all of these agencies will have procedures that require:

    • For people who do not have significant behavioral issues or involvement with law enforcement:
      • Each individual service plan will describe methods, and specify service types and amounts, necessary to meet the individual’s needs in personalized integrated settings.
      • No such person will be placed in a segregated congregate program or facility unless and until a good-faith effort to provide integrated personalized services as specified in the service plan has been made, including providing all of the specified services in the specified amounts for a reasonable period of time sufficient to allow the individual to adjust to the setting(s), has failed and resulted in the person being at immediate risk of serious harm to him/herself or others.
    • And, for all people with disabilities with and without behavioral issues:
      • Any admission to a segregated congregate facility will be for intensive rehabilitation purposes only, and will be temporary and strictly time-limited; such admission will in no case last longer than 18 months, but each individual shall have a detailed discharge plan, including a specific discharge date and clear descriptions of services focused on enabling the discharge, established within 15 days of admission.
      • Individuals admitted to a segregated congregate program will have a full-time schedule of intensive structured activities, including one-to-one training, and including appropriately supervised training conducted in integrated community settings, all of which will be focused on enabling discharge to a personalized integrated setting.
      • To the extent that conditions in a previous personalized integrated setting contributed to the person’s need for admission to a segregated congregate program, concurrently with the person’s stay in that program, aggressive efforts will be made to modify the integrated personalized setting to ensure that it will more effectively meet the person’s needs when s/he returns to it.
      • All agencies that operate or fund segregated congregate programs will have procedures to frequently monitor admissions and discharges to ensure that they comply with these rules.
The “last resort” legislation should also contain provisions, and funding appropriations, to increase the availability of integrated affordable (and, as needed, accessible) scattered-site housing whose provision is not contingent upon acceptance of services. The legislation should be phased in over at least three years to enable agencies to develop housing options and smoothly transition individuals into personalized integrated settings.

As we went to press, advocates from around the state were gearing up to go to Albany on May 31 to make it clear to the Governor and legislature that the Justice Center is not enough; we want real justice, and that means integration.

Long May We (wait to) Waive

As OPWDD continued to work on its proposed new “People First” Medicaid waiver over the past few months, it announced more details, and apparently ran into difficulties with getting the feds to approve its plan. Although OPWDD claims its timetable has not changed, things have clearly been delayed by at least a few months, if not longer.

We’ve covered this subject in detail, so we won’t repeat things here. For more information, see AccessAbility Summer 2011 and later issues.

Over the winter and spring, OPWDD was supposed to have analyzed the 251 responses it got to its Request for Information (RFI) on specific waiver issues. The analysis was to have been posted on OPWDD’s website in March. At press time in late May, it still had not been posted.

At the same time, OPWDD was negotiating with the Centers for Medicare and Medicaid Services (CMS) on the terms of the waiver. Much of this negotiation was described as “discussions” and has not been made public. However, CMS did give OPWDD a list of several questions to be answered, and “non-negotiable” conditions that OPWDD was required to affirm. These, and OPWDD’s responses, were made public on OPWDD’s website in April at:

Then in May, CMS published OPWDD’s original waiver application on a website designed to get public comment. STIC provided comments and urged others to do so; by the time you read this, the deadline for comments will have passed, and CMS may have announced a decision. Or they may not have; read on for details.

Neither the application, the response to CMS’s questions, nor later information from OPWDD have effectively addressed the concerns of STIC and other advocates. In some areas, they actually made things worse.

We’ve said that OPWDD’s plan can’t solve the problems that people with both developmental disabilities, and other disabilities that are served by other state or county agencies, face with getting services, because it does not mandate changes at those other agencies, and it doesn’t establish a central authority to compel those agencies to cooperate. Unfortunately, none of the published documents commit county mental health agencies, or state agencies other than OPWDD, to make any changes or cooperate with OPWDD. The response to CMS contains a long section on cross-systems service coordination. However, it only describes vague, day-dreamy scenarios about what “might” or “could” happen in an indeterminate future. The recent legislation enacted on this point only “allows”, and does not require, state agencies to remove eligibility, regulatory, and procedural barriers that impede cross-systems services. It explicitly does not make any changes to state laws that impede those services.

Similarly, the response to CMS on quality assurance repeated OPWDD’s claim that integration, self-direction, and consumer satisfaction will be important quality issues, without changing any significant details about the proposed Quality Scale. That scale will still only require providers to make changes if they have serious problems with health, safety, or fiscal governance. Providers that unnecessarily segregate people, violate their civil rights, or refuse to respect their wishes will not suffer any penalty other than not being deemed “high quality” providers.

CMS included a “non-negotiable” condition that OPWDD affirm that it will fire state employees who are convicted of criminal abuse or neglect. OPWDD refused to do so; its response said only that it will ensure that such criminals don’t have direct contact with consumers. This is due, of course, to collective bargaining agreements that carry the force of law. Neither OPWDD nor the Governor seemed willing to take effective action to deal with this at press time (see An Injustice Center?).

CMS required OPWDD to provide clear goals for reducing reliance on sheltered workshops that had been lacking in the waiver application. OPWDD responded by saying they plan to reduce the number of people in workshops by 25%, move 40% of people who get “prevocational” services into employment, and move 10% of people getting day habilitation into employment, over ten years. This is very slow—but at least it’s a measurable goal.

Lots of people have asked how OPWDD will ensure that DISCOs that provide both care coordination and direct services to the same person won’t “self refer” inappropriately. We all know of service providers who only tell people about the services that they themselves offer. Both state and not-for-profit service coordinators and providers do this, and people are very concerned about it. People are also worried that managed care needs assessments will downplay people’s needs in order to cut costs.

OPWDD has responded by saying that its staff will do the needs assessments and that there will be “independent” enrollment brokers and advocates to ensure that people get all of the services they need from the providers they choose. However, those brokers and advocates will also most likely be OPWDD employees. Finally, they say that “clear and readily available information regarding service providers’ performance will allow individuals and families to make an informed choice of service providers.”

We don’t think this is adequate protection against self-referral. And we think it’s absurd for OPWDD to portray itself as the “good guy” who will defend consumers against the mean old cost-cutting DISCOs when it is OPWDD that is mandating the use of DISCOs.

OPWDD claims that its employees, since they won’t work for DISCOs, can be the “independent advocates” that people have asked for.

First, this may not even be true on its face. In its response to CMS questions, OPWDD dropped a bombshell that hadn’t been mentioned before. It said it intends to allow not only not-for-profit agencies, but “public entities”, to be DISCOs. “Public entities” are units of government or government agencies. We’re guessing OPWDD has in mind county agencies and its own regional offices (DDSOs). If a DDSO can be a DISCO, then the argument that DDSO employees can be independent advocates goes completely down the tubes.

But even if that doesn’t happen, OPWDD employees are not the “independent advocates” people are calling for.

Although DISCOs will be managed-care organizations that have an incentive to save money, giving care planning authority to DISCOs will not end OPWDD’s own need to do so. OPWDD is being required to cut costs by CMS because of its history of inflated service rates. So of course when OPWDD staff set rates or do needs assessments they will do it in a way that clamps down on spending, just as they do now when setting CSS budget amounts.

Nobody outside of OPWDD believes its state-employee service coordinators are “independent advocates”. They certainly will not advocate for people to get services that OPWDD has refused to provide. Most of them won’t take the consumer’s side in a disagreement with another OPWDD employee and pursue it up the chain of command under any circumstances.

Also, OPWDD coddles and protects certain preferred providers, to the extent, in some cases, of perpetrating or covering up fraud and abuse (see Scandal and Its Discontents). This weakens OPWDD’s claim that its so-called “independent” advocates will deal fairly with all of the DISCOs and service providers it oversees, or advocate aggressively against them when needed.

This is not what the hundreds of people who have asked OPWDD for independent advocates and evaluations meant. They meant that evaluators who do needs assessments, and advocates, must have no financial interest in service plan decision-making. They shouldn’t be employed by OPWDD, a DISCO, or any service provider under contract to a DISCO.

As for self-referrals: Making information about service providers’ performance available won’t help if people don’t know those service providers exist. OPWDD is only talking about its “Provider Performance” website here. Despite repeated suggestions from advocates, OPWDD has still not stated that it will ensure that every person who seeks services will be told about every possible service and every available provider. As long as there is no such assurance, the problem of self-referral remains. This isn’t hard to fix. STIC’s TBI and NHTD RRDCs give people a list of all of the available options, on which they indicate their choices and sign their names, after which the signed list goes into the person’s file where it can be reviewed by auditors. We don’t understand why OPWDD won’t say they will require DISCOs to do this.

Some of us believe that OPWDD should forbid DISCOs to provide both service coordination and direct services to the same person. We realize that many people who get both of those things from STIC are very happy about it and wouldn’t want it to change. On the other hand, something needs to be done about those other agencies that don’t give people a free choice of all possible services and providers the way we do. That will be especially important if STIC does not become a DISCO (we’re thinking about it) and those agencies do. There can’t be one rule for STIC and another rule for everybody else. We aren’t sure how to resolve this problem in a fair way. We are open to suggestions from you.

In May OPWDD said it had “learned” that it doesn’t need an 1115 Demonstration waiver to achieve its goals; it could do it using a combination of a 1915(c) Home and Community Based Services waiver (like OPWDD has now) and a 1915(b) Managed Care waiver. We’re glad to hear that OPWDD has finally learned something that we told them last summer when we presented the State of Michigan’s model to one of the waiver Design Team subcommittees. We don’t know why they suddenly “learned” it just now though. We have heard from knowledgeable sources that CMS officials have been saying that there hasn’t been nearly enough “stakeholder input” involved with several recent 1115 waiver proposals from various states. We at STIC have tried to inform CMS officials directly about OPWDD’s failure to take consumer input seriously.

This change could be very good news. CMS has been moving forward with a new, much tighter, definition of “home and community based” services (see AccessAbility Fall 2009 for details; a new proposed regulation was released for comment this May). That definition would not apply to an 1115 waiver but will govern 1915(c) waivers. Operating under 1915(c) and the new definition could force OPWDD to move people into integrated personalized settings much faster than the proposed People First waiver would do.

Also interesting, and, perhaps, related to CMS’s apparently chilly response to the original plan, was the revelation that OPWDD now says that after CMS approves some sort of waiver, it will conduct a year-long “implementation planning” process with “stakeholders” who will be on various workgroups “that will plan the operational details of the many changes in administrative functions and processes that are needed to fulfill the system improvements of the waiver.” STIC, naturally, will try to get involved in this process. The Independent Living movement has not been formally represented in OPWDD’s process since the Design Team subcommittees broke up last summer, so this would be a good way to correct that omission.

At any rate, it’s going to take longer than expected. OPWDD’s original timeline had projected CMS approval for April 2012, with DISCO pilot applications coming out in the summer and approved pilots starting up in the fall. Now they’re only saying “some time in 2012” for CMS approval of an 1115 waiver, and even later if they go with the combined 1915 waivers. CMS could issue an approval for the original proposal in mid-June but it seems unlikely that they will do that.

We’ll keep you posted, but you can stay on top of events yourself. Check the People First Waiver website frequently at:

Budget Goodies

NY’s final 2012-2013 budget ended up with a nice basket of goodies for people with disabilities.

As we predicted, the Governor’s proposal to end the spousal refusal provision for people using community-based Medicaid long-term care services was a red herring; it had no support in the budget negotiations and was dropped from the final bill.

We couldn’t completely sort out details of the various housing initiatives, though they seemed mostly positive.

There is a new “Supportive Housing Development Program”, funded at $60 million for 2012-13 and $75 million for each of the following two fiscal years.

Some sources have said this money is in addition to amounts allocated to continue existing multi-year housing programs such as New York City’s “NY-NY III” program and the roll-out of supported housing to comply with the DAI v Paterson and Joseph S v Michael Hogan court decisions, which mandated moving people with mental health disabilities into supported housing from adult “homes” and nursing “homes”. We were unable to verify that claim, however.

About one-third of this year’s $60 million is projected to go to “scattered-site rental and service subsidies”, divided among OMH, OPWDD, OASAS, DOH’s AIDS Institute, the Office of Temporary and Disability Assistance, and the state housing agency, the Department of Homes and Community Renewal (DHCR). Another third will go to DHCR bricks-and-mortar projects. The remaining $20 million will be divided among several specific programs, including, apparently, $7 million for “community-based permanent housing” for residents of just one nursing facility in New York City. These programs might include the pre-existing housing initiatives mentioned above; OMH reports that funds were approved to carry out the two court decisions. Details on all this were to be worked out later, and we have no more information.

We also don’t know what “community-based” or “supportive housing” really means in most of these contexts. Advocates pressed hard for funds to develop affordable housing that is accessible to people with disabilities without bundled services, but it’s unclear how successful they were.

There is also a new “Supportive Housing Development Reinvestment Program” that is supposed to fund housing development with funds saved by closing nursing home and hospital beds. No one knows how much money this will involve.

Funds allocated for the state’s Low Income Housing Tax Credit were doubled, to $8 million. And a few million extra dollars were thrown in for various homelessness prevention and neighborhood preservation programs.

On the downside, the Access to Home program will receive only $1 million, a major decrease from the previous year. The program pays for home modifications for low-income people with disabilities who don’t qualify for various Medicaid waivers or other forms of assistance.

All told, this will be a significant boost for housing for people with disabilities, if it is spent wisely, and not exclusively for housing bundled with services.

All of the proposals to convert Early Intervention (EI) services to managed care were rejected. A couple of good ideas, including a statewide fiscal intermediary to handle EI billing, and a requirement that EI service providers refer people to OPWDD when it appears they are eligible for that agency’s services, were retained.

The legislature rejected Cuomo’s attempt to let OPWDD sole-source the “DISCO” pilot grants that are to be part of its new People First Medicaid 1115 waiver. This was a big victory that has apparently helped slow down the OPWDD managed care bandwagon.

OPWDD’s reorganization into separate regional offices to administer state-operated and not-for-profit programs, was approved and is proceeding. We aren’t sure if this is a positive or negative development.

There was some initial opposition in the Legislature to Cuomo’s multi-year plan to transfer responsibility for both Medicaid funding and administration from county governments to the state, but the final budget contains such a plan. We haven’t seen details on how it will work though. Some county governments obstruct delivery of Medicaid services on grounds of cost, in defiance of federal “statewideness” requirements, and have made their provision of a portion of the state’s Medicaid dollar match a reason to complain about “unfunded mandates”, so getting counties out of the Medicaid business should be a good thing, if it’s done right.

On the purely medical side:

The “prescriber prevails” provision will be restored for atypical anti-psychotic medications for all ages, whether or not in managed care, on January 1, 2013. The provision was not restored for other classes of drugs.

Medicaid funding was restored for podiatry for diabetics, lactation consulting, hepatitis C care coordination, and harm reduction/needle exchange services. Access to enteral formula was expanded beyond people living with HIV/AIDS to cover “additional conditions”.

Several aspects of the Elderly Pharmaceutical Insurance Coverage (EPIC) program were restored. The details are too complex to include here, but it looks like the program will actually become useful again. More information is at:

End Corporate Control of Our Government!

US law says corporations are “people”, with the same civil rights as human beings. The 2010 US Supreme Court Citizens United ruling gave corporations free speech rights. It equated money with speech to ensure that rich corporations will always be able to buy elections.

This is why:
  • A majority of citizens favor single-payer health care but we can’t get it
  • A majority of citizens favor strong anti-pollution laws but we can’t get them
  • 60% - 70% of citizens, including super-rich investor Warren Buffett, say taxes should be raised on rich people and corporations to pay our debts but we can’t get that done
  • 69% of Americans oppose cutting Medicaid but it’s on the chopping block anyway
  • 89% of Americans in a 2010 poll favored raising taxes to ensure that people with disabilities can live in their own homes instead of segregated facilities, but we can’t get Congress to act
  • The “Tea Party” is mostly funded by rich corporations, corporate executives, and corporate lobbyists like Fox News, the Koch Brothers, and the US Chamber of Commerce; they want to deregulate corporations and cut taxes for the rich and they are duping good-hearted people into supporting them

We must face facts. The REAL people of the United States, including people with disabilities, will never get what they want from government until corporate power is broken.


Join the movement to amend the US Constitution to end civil rights for corporations:

Take back our government from a small minority of far-right-wing anti-tax fanatics and corporate shills:

Boycott products made by the Koch Brothers: Angel Soft(R)  Brawny(R)  Coronet(R)  Dixie(R)  Mardi Gras(R)  MD Bathroom Tissue Quilted Northern(R)  Soft n Gentle(R)  Sparkle(R)  Vanity Fair(R)  Zee(R)

Courts Watch

DAI v Paterson Overturned

In April the US Second Circuit Court of Appeals overturned the federal district court’s decision in this case, which ordered OMH to move 4500 people with mental health disabilities out of adult “homes” and into supported living over three years.

This is bad news. But it’s important to remember that the district court did not find fault with the basic decision that adult “homes” are unnecessary, and therefore illegal, segregation. The court did include a vague statement that it had “concerns about the scope of the proposed remedy”. But the decision wasn’t overturned for that reason either.

It was overturned because the Court believed that DAI lacked standing to bring the lawsuit. The language of the decision indicated that this problem could be fixed if DAI re-files the case as a class action suit rather than in its sole capacity as a federal Protection and Advocacy (P&A) program subcontractor. Or, if DAI was designated by the state as its official agent to oversee Protection and Advocacy programs, the agency would have standing on that basis. Currently, the state’s official agent is the Commission on Quality of Care (CQC). However, federal auditors have found fault with the fact that CQC is a state agency under the Governor, and therefore not sufficiently independent from the state agencies it is supposed to monitor, and Governor Cuomo has said the state will soon spin off its P&A authority to a not-for-profit agency (see An Injustice Center?).

DAI and the state are now attempting to negotiate a settlement. The US Department of Justice, whose standing is undisputed, has indicated that it will re-file the case itself if no agreement is reached. So the state is definitely not off the hook, and it appears to be going forward with development of supported living services for the affected people.

Advocates have urged Governor Cuomo and OMH to accept the district court order as-is and not prolong this any further, especially if Cuomo wants his publicly-proclaimed support for the Olmstead decision and integration for people with disabilities to be taken seriously.

DOJ Supports Lane v Kitzhaberdiv class="smallsubThis is the class action suit filed in federal district court against the state of Oregon for keeping people in sheltered workshops instead of providing supported employment.

As we reported last time, the case has parallels in New York, such as ACCES-VR’s (formerly VESID) recent shift away from supported employment in favor of both frequently ineffective (but less expensive) “direct placement” services, and simple denials of “employability”. Also significant, the plaintiffs assert that segregation actively harms people with disabilities, a claim that, if recognized by the courts, will be helpful in defeating the oft-stated argument that families must be allowed to choose to segregate their relatives if they wish.

In April, the US Department of Justice (DOJ) submitted a “letter of interest” to the court supporting the suit and opposing OR’s motion to dismiss.

We weren’t able to see the state’s motion, but we did read the DOJ letter. It indicates that OR claimed that the ADA’s Title II “integration mandate” for state governments, on which the Supreme Court Olmstead decision was based, only applies to residential services; that people in sheltered workshops aren’t segregated for a long enough period of time to be significant; and that plaintiffs are merely complaining that they aren’t receiving their preferred “standard of care”.

DOJ convincingly refutes all of this. The ADA’s legislative history, and the plain language of the law and regulations, clearly state that all services and programs provided or funded by state government must not discriminate due to disability, and court decisions have said that such discrimination includes unnecessary segregation. The duration of segregation isn’t relevant; time minimums aren’t in any definition of “segregation” in law, regulation, or court decisions. Courts have ruled, for example, that schools can’t segregate students with disabilities even for as long as one hour to eat lunch. As for “standard of care”: The claim is that people with disabilities want a higher quality service than the state is required to provide. DOJ said two things about that: First, the plaintiffs are requesting employment assistance services to be provided in a different environment. That is not a “standard of care” issue; it’s the same issue involved in cases where courts have found that if the state provides nursing services in a nursing facility, it must also provide in-home nursing services. Second, OR already provides supported employment to some people; the issue is that it has cut that service in favor of sheltered workshops.

ADAPTers Arrested in DC

On April 23, about 125 ADAPT protesters, including actor Noah Wiley, were arrested in the Cannon House Office Building in Washington, DC for protesting Republican House Budget Committee Chairman Paul Ryan’s budget plan to slash Medicaid by one-third. This was a courageous stand to take, even though everyone understood that Ryan’s budget was dead on arrival in the Democrat-controlled Senate.

How courageous it was didn’t become clear until later, though. People arrested for civil disobedience have to go through a court procedure, but normally in Washington, where protesters frequently come from out of town, the court will allow a lawyer to represent them without them being physically present. This time, though, the prosecutor refused to accept this and the judge ordered about half the protesters to appear in person. Most of these people have very low incomes; they worked hard to raise money to come to Washington for the protest, but now they are liable for the cost of returning.

This may be an indication that certain people are becoming afraid of ADAPT’s successes. In recent months their efforts have led to a modest increase in HUD support for housing for people with disabilities, and to the release of (most of) the regulations for the Community First Choice option, a feature of the Affordable Care Act that allows states to opt to establish a Medicaid State Plan benefit to provide attendant and related services to people with disabilities in lieu of putting them into institutions.

Scandal and Its Discontents

Revelations concerning scandals within OPWDD and its subcontractors continued this spring, accompanied by a rising level of public response.

Cuomo “Vulnerable Persons” Consultant Clarence Sundram’s report on abuse and neglect in residential facilities was leaked to the public in March (see Sundram Conundrum); this eventually precipitated a major uproar.

The first winds of that storm blew in April, when Republican State Senator Roy McDonald, the chair of the Senate Standing Committee on Mental Health and Developmental Disabilities, scheduled a public “roundtable” to promote a package of legislation he was proposing to address the scandals. The package included things like limiting overtime and providing more training for direct-care workers. Among others, McDonald invited OPWDD Commissioner Courtney Burke, and a well-known OPWDD whistleblower, Jeffrey Monsour, to take part in the event.

Monsour, described by the media as a “gadfly”, had reported to then-OPWDD Deputy Commissioner Max Chmura (later briefly Acting Commissioner until he was fired by Cuomo) that fire-drill records had been falsified in group “homes”, and that the lack of on-site supervisors in these facilities was resulting in abuse and neglect of residents. The agency took no action on his reports, but after Monsour had an argument with another state worker they tried to suspend him for four weeks, something OPWDD typically wouldn’t have done for someone accused of abuse at the time. It was difficult not to draw the conclusion that Monsour was being retaliated against for whistleblowing, which is illegal under New York State law.

Someone somewhere in the Cuomo Administration got wind that Monsour would be on the same panel as Burke and a complaint was delivered to McDonald about it. McDonald’s staff called Monsour and told him he couldn’t come. The New York Times learned of this (no doubt from Monsour), and the waste material encountered the wind machine.

When the Times called McDonald’s staff, they re-invited Monsour. The Times and other media began asking Burke what was going on. Her spokesperson, Travis Proulx, attacked McDonald and the media in an email sent to “the Senate”. Proulx wrote that, “While we think this is an inappropriate venue that will serve more as a public relations effort to feed sensationalized press coverage of these issues given the oft-stated bias of some of the participants, and don’t think it will be productive substantively...,” Burke would show up after all.

McDonald’s staff apparently told the Times that somebody in Burke’s office had told them Burke wouldn’t come if Monsour was there. Later, Burke claimed not to know what had really happened, and reporters suggested that the message had come directly from Cuomo’s staff. Burke stayed at the roundtable only briefly, to issue a prepared statement, then left.

This event prompted a thorough airing in the media of the frustrations of advocates with OPWDD’s, and Cuomo’s, responses to over a year and a half of scandals. Most of the coverage focused on Michael Carey, the father of Jonathan Carey, who was killed by abusive OPWDD employees a few years after being abused in a private residential school funded by OPWDD. Carey has been a fearless, if not always articulate, advocate for improving oversight of people with developmental disabilities in segregated settings. His primary concern was that abuse should be reported directly to the police and not filtered through state agency investigators. State law requires such direct reports and in the wake of the scandals, OPWDD had repeatedly issued orders to its staff and its contractors that such reports must be made. Carey seems to have been reacting to Sundram’s leaked findings, which proposed that all reports go to a state-operated hotline that would decide whether or not to call the police. Carey also pointed out that although the Cuomo Administration and a public employee union had agreed to establish a new “table of penalties” for abuse and neglect last year, the table had not yet been produced.

No doubt the media would not have been nearly as interested if Monsour had been quietly allowed to attend the roundtable. The misstep by state officials suggests a response to stress. Between the Sundram leak, CMS’s discouraging response to OPWDD’s People First Waiver proposal (see Long May We (wait to) Waive), the feds’ criticism of the Commission on Quality of Care’s lack of independence (see AccessAbility Spring 2012), ongoing media revelations of scandals, state employee union recalcitrance, and sniping by legislators acting independently, the Cuomo Administration has had a hard time portraying itself as a responsive, in charge, and irresistible force for change lately. Some people appeared to be getting a little hot under the collar.

One of the nagging media scandal reports resulted from State Comptroller Tom Napoli’s announcement that he was going to review whether OPWDD’s Central New York DDSO had made the changes required after massive revelations of collusion, bid-rigging, and preferential awarding of overtime some three years ago.

Also revealed was another not-for-profit provider embezzlement case. The Poughkeepsie Journal reported that Guest House Community Services in Peekskill settled with the state Medicaid Inspector General (IG) and will pay back over $153,000 in “overbilled” Medicaid funds. Overbilling is not always fraud; it can easily occur accidentally due to the extreme complexity of Medicaid regulations and related paperwork. However, the IG found that over half of all claims submitted by Guest House had some problem. In any case, the agency’s executive director, Joseph Akumu, was convicted of embezzlement last year, sentenced to prison, and ordered to pay back the $300,000 he stole to Guest House. That agency will have to turn over anything it collects from Akumu to the state. This supports the notion that these “overbillings” were fraudulent. Guest House’s certificate to operate was revoked by OPWDD in 2010.

Meanwhile, OPWDD was peppered with legislative demands that the agency conduct video surveillance of its residential facilities to prevent abuse.

Michael Carey proposed far-reaching use of cameras at Senator McDonald’s round table. We would urge caution about that. Instances of abuse and neglect occur in bathrooms and bedrooms. People living in these facilities already have their privacy violated on a regular basis; we don’t think they should be subjected to any further indignities. The way to make people safe is to move them out of these facilities and into the light of day.

However, in the wake of the rape of a person with a developmental disability by an apparent intruder at her residence, two Assembly members proposed a bill to require cameras to be installed at all entrances and exits to OPWDD residential facilities. OPWDD has been noncommittal in response to this bill. However, after the media storm in late April the agency suddenly began promoting a “pilot program” to put cameras in vehicles that transport people with developmental disabilities.

Sundram Conundrum

This spring Clarence Sundram, Governor Cuomo’s special consultant on “vulnerable persons” (and former chair of the Commission on Quality of Care (CQC)) emerged from the shroud of secrecy under which he had been working for nearly a year.

Sundram prepared a draft report on abuse and neglect of people with disabilities in residential programs last October. At that time PowerPoint slides of some of his findings, which he presented to Cuomo and his top people, were made public. These slides showed alarming inconsistencies among the various state agencies regarding how they define “abuse” and “neglect”, and their procedures for reporting, investigating, and tracking incidents. Insiders reported that Cuomo, who knew very little about disability issues or how the state agencies functioned, appeared to be genuinely shocked by the report. But the full text remained out of sight until March, when staff “frustrated by the delay” leaked it to the New York Times.

The report wasn’t officially released until Cuomo was ready to say what he wants done about it, in May, though the timetable may have been speeded up by the April OPWDD whistleblower brouhaha. See Scandal and Its Discontents for that story; see An Injustice Center? for our article on Cuomo’s plan. This article describes the draft report; the public version doesn’t appear to have been changed.

Although Sundram acknowledged that the issue goes beyond residential facilities, he said his brief was only to address those programs. He did a good job of identifying and describing systemic problems in most—but not all—of them, and he should be praised for speaking frankly about things that many people in government would rather not hear. However, many serious issues, including some that Sundram described in passionate terms, weren’t adequately addressed. And the report was oriented toward protecting the workforce and management from scrutiny and oversight from independent entities.

Segregation should be a “last resort”.

The most important thing Sundram said was this: “Reinforce the policy of community integrated services wherever possible, and use congregate residential care as a last resort. The opportunity for people in residential facilities to be seen regularly and to interact with persons outside their residence is a powerful safeguard. It creates opportunities to form personal relationships with people not affiliated with their residence in whom they can confide or who may notice signs and symptoms of abuse or neglect and who are not deterred from reporting it.”

This was the first item under the heading of “Prevention”. It did not appear under the category of “Legislative Action”, which is where it should have been. And it has so far not resulted in any proposals from elected or appointed officials to implement it.

Administrators cause abuse and neglect to occur.

Sundram was fearless in showing that administrators of state-operated and -funded agencies have been responsible for creating a climate that breeds incidents of neglect and abuse, by not providing adequate staffing levels or training, by not providing pay scales (at least in voluntary settings) adequate to attract and retain good workers, by not providing adequate on-site supervision, by misusing the concept of “zero tolerance” to create disincentives for reporting of serious incidents, and by a hypocritical approach to protecting “whistleblowers”.

Sundram correctly stated that most incidents of abuse and neglect aren’t due to deliberate malice, but rather arise from frustration exacerbated by overwork, fatigue, and a lack of supervisory support. Here are some remarkable quotes:

“... when something goes wrong, the direct support worker is expendable, most often targeted for dismissal, justly or unjustly, especially in the private sector which generally lacks robust due process protections for employees.”

“Direct support staff see themselves as victims of a larger system that would be quick to punish them for minor abuses but that is slow to recognize and improve adverse working conditions that create the stress that contributes to this abusive behavior.”

“Job descriptions for ... professional staff and supervisors ... provide considerable latitude for acceptable behavior and make it more difficult to pin down failures of supervision or training to specific duties. In a legally oriented disciplinary process, direct support staff is therefore more susceptible to discipline for breach of a defined duty than professional staff. Furthermore, when the implementation of a disciplinary sanction appears imminent, most professional staff have considerably greater employment options than direct support staff and are assisted in some cases by assurances of a clean letter of reference. If the disciplinary machinery is perceived to grind down the powerless while leaving the more powerful unscathed, direct support staff have no incentive to provide colleagues as fodder for this machine.”

Sundram noted that residents are presumed incapable of being truthful and reliable reporters of abuse, and that even when a resident who has no intellectual disability files a complaint, the resulting process is a “mismatch” that is likely to result in his/her complaint being invalidated.

And he said, “There is reason to suspect ... that in addition to these very real problems, and perhaps because of them, managers have a fairly powerful and probably subconscious inclination to follow the path of least resistance. Barring any outcry by families or patient advocates, many will conclude an investigation with the decision of allegation unsubstantiated, which avoids the inevitable confrontation with labor unions and attendant adverse consequence for the facility and the resident....”

Sundram condemned the misapplication of the concept of “zero tolerance” in general, and showed how it is also responsible for problems in residential settings.

He said that firing, or trying to fire, every person who commits any act of abuse or neglect is counterproductive. First, in a unionized workplace it doesn’t succeed, and therefore leads staff to disrespect the authority of their supervisors. Second, especially in non-unionized settings, where it does succeed, it discourages staff from reporting their co-workers since they don’t want to put anybody out of a job. And third, “It also allows managers to avoid a more searching inquiry which might require confronting their own responsibility for conditions leading to the incidents such as for scheduling adequate staff, providing training, supervision, correction and learning by their employees. Such unfair disciplinary practices powerfully communicate to employees management’s lack of regard for their worth.”

It remains to be seen if OPWDD will take this issue seriously. So far, two top administrators have been fired (the former Commissioner of OPWDD and the former CQC Chairperson). We aren’t aware of any DDSO directors being fired (though one was demoted for covering up abuse, and former Broome DDSO Director Carl Letson departed rather suddenly under circumstances that weren’t made public). We haven’t learned of any cases where lower-level OPWDD administrators or supervisors have actually been fired as a result of any of these incidents. Some are in the “pipeline” for dismissal but the state hasn’t taken effective action to remove control over firings from state employee unions, so it’s by no means clear that they will actually be fired. It is clear that dozens of such employees at all levels of the agency are culpable for the incidents that have occurred, including not only abuse and neglect but also financial malfeasance and corruption. We need to see justice done, and done publicly, in these cases, in the coming months.

Standardize definitions of abuse across all agencies.

Sundram showed that definitions of abuse and neglect, and procedures to address them, need to be standardized. We agree with most of what he said, and most of his recommendations were proposed in the Governor’s bill.

Sundram included a “systemic problems” category of abuse and neglect. This is a good idea, but his language was not sufficiently clear.

He said, “In some cases, systemic problems may also support a finding of neglect of duty by supervisors and managers.” He classified “failure to perform an essential duty that causes physical injury which creates a risk of death, or which causes death or serious disfigurement, impairment of health or loss or impairment of the function of any bodily organ or part, or serious emotional harm, or creates a foreseeable risk of either,” as conduct that may be criminal and/or which justifies termination and prohibition on re-hiring.

We would have preferred to see the following phrase added to the definition: “and includes not only duties involving direct interaction with individual service recipients, but also duties related to ensuring adequate staffing levels and training and supervision of staff”.

Bring children back from out-of-state facilities.

We applaud this recommendation. It’s likely to be opposed in the courts by family members who seem to have undue influence upon the policies of the State Education Department, such as parents of NY children who are incarcerated in the Judge Rotenberg Center in Massachusetts. We hope that state officials will be as courageous in implementing this recommendation as Sundram was in making it.

Hotline all abuse and neglect reports.

Sundram placed a great deal of unjustified reliance on his proposal for a centralized hotline to take abuse reports in order to achieve significant improvements in the state’s handling of these incidents. He proposed that the current child abuse hotline operated by the Office of Children and Family Services be expanded and continued under that agency.

The OCFS child-abuse hotline system actually doesn’t work very well. Aside from the fact that it is extremely limited by both statute and regulation regarding who can report, what can be accepted as a report, and what will be done with reports, it suffers from problems with poorly-trained hotline operators mishandling reports, and a lack of follow-through on accepted reports.

The governor’s “Justice Center” bill did not go this route; it created a new hotline instead. We still have important objections to the concept though (see An Injustice Center?).

Let state agencies conduct internal investigations under CQC oversight.

Sundram essentially argued that it would be too hard to transfer the investigative responsibility, including all of the inside knowledge about the populations served and the service systems, and the manpower, to an independent agency responsible for investigating serious incidents of abuse and neglect. He said the CQC should be empowered to oversee more agency investigations, but not necessarily to conduct them. Again, the Governor did not completely agree, though what he proposed still has serious shortcomings (see An Injustice Center?).


Taking Control of Your Own Personal Care

by Kami Giglio

Did you know that if you are eligible for Medicaid and require the assistance of a personal care worker to remain living independently in your own home, you may be able to control your own services through the Consumer Directed Personal Assistance program (CDPA)? Through this program you, or a responsible adult Designated Representative acting on your behalf, can recruit, hire, train, supervise, schedule, and dismiss personal assistants to assist you in your own personal care and housekeeping needs. What’s more, because they are working for you and under your authority, personal assistants through the CDPA program can even perform most skilled tasks that you may need done. No more strangers coming into your home on the scheduling whims of Personal Care agencies. No more expensive and hard-to-come-by nursing visits.

So what exactly is CDPA and how do you get it? Consumer Directed Personal Assistance is a Medicaid-funded program for people with disabilities who require homecare services for at least 120 days. At this point in time each county is responsible to assess individuals to determine their eligibility for the CDPA program. As you have been reading for months in this newsletter, Medicaid managed care is an eventual reality for most programs in New York State, and CDPA is not an exception. Eventually the Managed Care agencies will take over the role of the county and become the assessing and authorizing agency for this and other home care programs. We will keep you informed as these changes occur. But for right now, to request CDPA services, you must first contact your county DSS or CASA office. A nurse will visit you and complete an assessment of your needs and your ability to direct your own services. If you are unable to direct your services, but have a responsible adult in your life who could, that person can be named a Designated Representative for you, to oversee your services on your behalf. The county nurse will get in touch with your doctor and request orders for in-home services. You will be given a Care Plan that authorizes a set number of weekly hours of service you may use, and specific tasks that you may have done for you during CDPA time.

You are now free to hire basically whomever you wish to provide those services to you. There are very few restrictions on whom you may hire. You may not hire your spouse. You may not hire your own parent or parent-in-law. You may not hire anyone under the age of 18. You may not hire anyone named on the Medicaid “Do Not Provide” list (usually people who have been convicted of some sort of Medicaid fraud in the past). Other than that, the choice is completely up to you.

Next, the county nurse will send a referral to the fiscal intermediary agency that the county contracts with to oversee CDPA services. STIC is the fiscal intermediary for Broome and Tioga counties. We act as the payroll and billing company for you. Once you have hired the personal assistant(s) of your choosing we will collect the necessary employment paperwork and medical information required by Medicaid, and put your personal assistant(s) on the payroll. You and your personal assistant(s) will fill out timesheets for the time worked, being responsible to meet the criteria in your Care Plan, and submit the timesheets to us. Your personal assistant(s) will be paid by STIC, and we will then bill Medicaid for reimbursement, saving you a lot of paperwork and time.

CDPA puts you in control of your own services. You choose who is providing intimate tasks for you. You choose who is coming into your home. You choose the times that meet your needs. The choice is yours. STIC’s CDPA program serves Broome and Tioga Counties. Contact your county to inquire about CDPA today!

Supported Employment

STIC’s Job Connections Supported Employment Program helps individuals with disabilities identify employment goals and seek meaningful employment through a person-centered approach. Our employment specialists work with people with disabilities to develop a plan to clearly identify employment goals specific to the dreams, personal preferences, needs and interests of the individual job seeker.

Once the employment goal is in place, the employment specialist identifies barriers to employment, such as transportation and accommodations, and works to help overcome these barriers to achieve a successful employment outcome. Our staff offers assistance with resume development, career exploration, and job interview preparation. The employment specialist advocates on behalf of the job seeker to assist them in obtaining a job of their choice in the community. Once the individual has obtained a job, our staff provide job coaching support at work to help master all job tasks, job accommodations, and various other supports.

We continue to provide people with ongoing support throughout the entire employment process. Additionally, individuals receive support to help retain the job, including help with learning new tasks, ongoing training, and fostering positive relationships with employers and co-workers.

If you would like to receive assistance with finding and maintaining a job that matches your skills, interests, and personal preferences, please contact Kandi Stevens at (607) 724-2111 (voice/TTY) for more information.

Trucks & Drivers Needed!

STIC sometimes assists people
with disabilities to obtain
donated hospital beds and
furniture so they can set up
independent households.

We need help moving this furniture.

Do You Have a
Truck or Van
Big Enough to
Haul Furniture?

Can You be Available
to Drive It?

Can We Put You on Our List?

Contact Danny Cullen
(607) 724-2111 (voice/TTY)

Summer 2012
Issue No. 106

There’s No Place Like Home
AccessAbility Masthead
ADAPTers Arrested in DC
An Injustice Center?
Budget Goodies
Courts Watch
End Corporate Control of Our Government!
Long May We (wait to) Waive
Scandal and Its Discontents
Sundram Conundrum
Supported Employment
Taking Control of Your Own Personal Care
Trucks & Drivers Needed!