New York – Fundamental and far-reaching changes are coming that will have a profound effect on every individual in New York State who receives services under the current system for caring for individuals with developmental disabilities. The changes, being touted as “Medicaid Waiver Reform,” are motivated primarily by the drive to cut the growth in the amount of money the state and federal government are spending on this care. Despite official denials, they will inevitably reduce the choice of care, quality of care and recourse to corrective measures available to the individuals receiving the care and their families. The plan is being developed and implemented with federal government approval largely behind closed doors. Its documents use dense language designed to camouflage its ultimate impact upon individuals with special needs.
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Under the deceptively named OPWDD 1115 People First Waiver, the Cuomo administration seeks to outsource the state’s responsibility for delivering services to individuals who qualify for Medicaid Waiver to non-governmental superagencies known as DISCOs (Developmental Disabilities Individual Support and Care Coordination Organizations), while capping their dollar cost to the government. The new system will resemble managed care HMO plans in the health care system, whose subscribers are required to receive all of their health care services within the HMOs network of providers. The HMO provides these services for a single fixed premium payment (minus deductibles and co-payments), and assumes the financial responsibility for paying the cost of the services that are actually delivered to plan subscribers as negotiated in its contracts with its providers.
The fear is that under the new 1115 Waiver system, individuals with developmental disabilities will be subject to the kind of substandard care and bureaucratic red tape for which some managed care plans have become notorious. Another fear is that the quality of care provided through the DISCOs will be limited by the same financial incentives that HMOs have to hold down their costs by limiting the amount and quality of care they provide to the minimum they can get away with.
The therapists and community organizations now actually providing the care will come under increased economic pressure either to leave the field or to cut back on the quality of their service in order to reduce their own costs. Over time, many will have no choice but to give up their independence and be merged into larger organizations or the DISCOs seeking economies of scale, much like what is happening in a lot of the US health care industry.
The Willowbrook Horrors
The concerns of the special needs community in New York State are driven by fears that these changes could undue much of the progress that has been made since the revelation of the deplorable conditions at the Willowbrook State School in Staten Island in the 1960’s and early 1970’s. Among social workers, Willowbrook was known as a warehouse for New York City’s mentally disabled children whom had been abandoned there by their families as well as the foster care agencies assigned to care for them.
In the early 1960’s, Willowbrook was the site of a notorious medical experiment, in which healthy children living there were deliberately infected with the Hepatitis A virus so that members of the medical staff could monitor the effectiveness of treating the disease with gamma globulin (blood plasma proteins, including certain antibodies).
When US Senator Robert Kennedy visited Willowbrook in 1965, he called it a “snakepit,” whose residents were “living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.” Seven years later, a TV expose by reporter Geraldo Rivera graphically revealed the severely overcrowded conditions there, and that the residents were suffering physical abuse by members of the school’s staff.
The public uproar that followed forced NY State to embark on a program of de-institutionalization. It gradually phased out large state-run facilities like Willowbrook and transferred their populations to small, community-based institutions and programs. This led to the current system for New York’s MRDD (mentally retarded and developmentally delayed) population. A class-action suit filed against NY State in federal court was settled with a 1987 agreement by the state to meet special guidelines for the community placement and lifetime care of the surviving members of the “Willowbrook class.”
A Turning Point for the Treatment of Developmental Disabilities
The Willowbrook scandal marked a historic turning point in this nation’s treatment of the developmentally disabled. It mobilized Special Needs advocates to demand more effective and humane care in a community setting close to their homes and families.
This led to the passage of a series of federal laws. The Rehabilitation Act of 1973 prohibited discrimination on the basis of disabilities. The Education for All Handicapped Children Act of 1975 was renamed and expanded in 1990 and is now known as the Individuals with Disabilities Education Act (IDEA). It requires the state to provide children who have a broad range of disabilities with a “Free and Appropriate Education” (FAPE) in accordance with their Individualized Education Plan (IEP). These laws are the basis for the government-funded service system in place today involving the participation of 750 different community-based organizations in New York alone, working under state and federal government supervision.
Now all those gains are in jeopardy, due to the enormous pressure being exerted by the federal government on the New York State government to reduce spending on services to the MRDD population. In response, the state is proposing to restructure the way that all current services are delivered to individuals who qualify for Medicaid Waiver, including basic health care services that are identified in their IEPs. The plan is euphemistically named the “1115 People First Waiver” and the cost of its development and implementation is being funded by the federal government.
The plan calls for many of the current functions of the New York State Office for People With Developmental Disabilities (OPWDD), which was formerly known as OMRDD, to be outsourced to the DISCOs, which are not under direct government control.
Services from the Lowest Bidder
The DISCOs are supposed to offer Medicaid Waiver qualified individuals the full range of services to which they are legally entitled, oversee the quality of those services, and pay the actual costs of providing them. In return, the DISCOs would receive a capitation (flat rate) per person payment provided by the government. This is very different from the current fee-for-service model, under which community service providers receive payments from the government that are directly related to the historic operating costs of their specific facilities and programs. The more costly the program has been to operate, the higher the reimbursement rate they received.
By contrast, the DISCOs will be paid a flat per-person rate established by the Cuomo administration for a standard spectrum of services for individuals with the same category of diagnosis. The DISCOs will subcontract the actual delivery of the services to community providers, with whom they will negotiate the reimbursement the provider will actually receive. Current community service providers will have to compete with one another for DISCO subcontracts.
Since the DISCOs pocket any difference between the flat rate the state pays them and what they pay the providers, the DISCOs will choose service providers largely on the basis of lowest cost, and in some cases, will be providing the services themselves. Over time, the higher cost providers will be eliminated, even if they provide higher quality services, and the quality of care will inevitably suffer.
Care recipients are supposed to be offered a choice of DISCOs, but given the powerful incentives for each DISCO to cut costs built into the new system, it is doubtful that the choices will be meaningful. Furthermore, since the DISCOs are expected to monitor themselves, the ability of care recipients and their family members to file effective complaints will be significantly reduced.
The State’s Real Priorities
The preliminary 1115 Waiver plans published by New York State talks about provisions to deal with these problems, but government officials have made it clear to community providers that the state’s top priority is to cut the cost of services, while paying only lip service to the issues of maintaining service quality and meaningful patient choice.
The state’s main goal is clearly laid out in the report of the fiscal team designing the 1115 Waiver (see reference 1): “In recent years, Medicaid expenditures for individuals with developmental disabilities have grown at twice the rate of inflation and three times faster than
personal income. . .
“The 2.8 percent annual growth in [the number of] individuals seeking services is due to factors largely outside the control of State government and is likely to continue indefinitely.”
The aim of the Waiver initiative, therefore is, “to meet individuals’ needs, but at lower cost. . . [by implementing] a capitation payment model to achieve these goals.”
State officials have said that the current system of 750 groups providing services is financially unsustainable, and admit that they hope to eliminate the higher cost providers with the new 1115 Waiver system.
The state began implementing planning and evaluation for the new system in November, and expects to launch pilot programs under the system and test DISCO operations in the latter part of 2012 (for the full 1115 Waiver timetable, see reference 2).
Unfortunately, what we know about the 1115 Waiver plans so far serves as a warning that many of the hard earned gains that have been achieved for the MRDD population since Willowbrook are now in jeopardy. Time is running out. The citizens of New York State must be alerted about how the 1115 Waiver changes will hurt all individuals with special needs. We must join together to protest and speak out against them, before it is too late.
Reference 1: http://www.opwdd.ny.gov/2011_waiver/images/fiscal_final_report.pdf
Reference 2: http://www.skipofny.org/upload/OPWDD_1115_Waiver_Background.pdf
Reference 3: The New York State branch of The Arc, a disability activist group, has provided a web page with layman’s definitions of the terms used by New York State in discussing the 1115 waiver – http://blog.nysarc.org/2011/08/10/understanding-the-1115-waiver-terminology-guide/
Reference 4: New York State has created a “People First Waiver” web page invites the participation of the public in the process of its development. It also accepts e-mail addresses for notification of further waiver developments: http://www.opwdd.ny.gov/2011_waiver/
The People First Waiver web page also lists an e-mail and telephone public comment line: E-mail to: [email protected]. The phone comment line is: 1-866-946-9733 or (TTY): 1-866-933-4889
The above article appears in this months Building Blocks – A Special Needs Magazine is a publication of the Jewish Press and will be on newsstands this week.
Yes ,my heart goes out to all the disabled citizens and their caretakers. However, the facts are that our governments are going broke. Medical costs are the biggest drag on the government. Unfortunatley the good days are over. If you want the government to remain solevent there is no choice but to cut services or quality some how. What is the other alternative. If the government does nothing it will go bankrupt, leading to devastating consequences. Thus, while I don’t either like to see the disbaled care cut, I am afraid we have reached the point where it is either cut or go bankrupt. What the government should have done is what yosef hatzadik did. Save up during the good years for the bad years. But its too late now and the only way out is cut cut cut.
This is terrible news for individuals with disabilities but we as a community must share in the responsibility. In the past three years there has been a dramatic increase in public health plan program enrollment like Child Health Plus. This plan is now available to individuals earning extremely good incomes(in some cases over $160K per year and more). The community receives these benefits without regard to the impacts such as these. The state is not a bottomless pit.When we abuse a system, the first to be affected are those most in need. It’s that simple. I have had patients argue that since it’s “legal” to enroll, there is no issue. The problem is that tax paying citizens are supplementing health insurance for families that can well afford to pay. While it may be legal(if in fact they are earning what they claim), it is unethical especially when it impacts the neediest in our communities. The state encourages these programs because in the past they were reimbursed by federal dollars for them. Now that those dollars are drying up, the state is cutting those least able to fight for their much needed benefits. The chickens have come home to roost.
When Obamacare forced insurers to insure adult children up to age 26 and those with preexisting medical conditions, everyone here rejoiced. IT AINT’T FREE, MAN. You pay for one thing, you have less money available for other programs – like helping the MRDD population.
CUT THE FAT in the State’s payroll – CUT THE STAFF in HALF – they don’t work anyway. DON”T HURT THE NEEDY PEOPLE – this is Socialism not Democracy
Some of the rational sounding comments here are just echoes of the Obama agenda (with the veiled suggestion that the problem began under Bush). It is true that health care has become a huge drain on governmental budgets. However, it is equally true that affairs have been badlyt mismanaged from time immemorial. I recall that years ago, there were procedures that emerged, verified scientifically to be effective, that were denied coverage under Medicare, as an effort to save costs. Meanwhile, the estimated annual savings to the Medicare budget was about “$13 billion”! None of the scientific experts involved had any rational, and politicians were among the dumbest ever brought into discussions on the subject. We now have huge drains on the system, with effective interventions denied, effective drugs excluded from the formulary, and open doors for those who wish to abuse the system. If these types of leaks were plugged, we would have a much smaller crisis in health care, if any at all. Paying doctors, hospitals, and clinics less is NOT the answer.
It makes no sense to have a pill bottle as the picture accompanying this article. It show a lack of understanding of the services provided through OPWDD.
The reason why the state is changing the payment methodology has to do with protecting the funding they get for consumers they provide direct care for. They do not want to subject themselves to the same cut backs they are foisting on the other providers.
Which is terrible because it well known that the state run facilities are much more expensive to run (think of Govt benefits versus private industry benefits, they are easily twice as much) and do not provide better care. This has more to do with government employees looking out for themselves than for looking out for consumers who need this care.
Concerned physician
I dont think you know what medicaid waiver is according to your response. Its not about medical expenses – it has to do with housing, much needed repite/rezhab help, and supplies, etc. Additionally, If it had to do with medical expenses, children with special needs would cap out of medical coverage within a very short time. Some of our special children require a massive amount of medical care and equipment that would reach the medical coverage cap for child health plus very very quickly. It would be a devastation to many parents with special needs if Medicaid Waiver was to be cut. Those of you who are commenting about the poor poor government obviously have no idea what it is like raising a child with special needs and I hope you never have to find out!
It’s not nice to be nice on the chesbhon of the disabled be brave stand up for the disabled don’t preach on their chesbohn
In simple terms, take care of yourself. The game is over. There is no more money to pay for everyone’s needs, legit or otherwise. The next generation will have to do it the old fashioned way. Somehow, before all these welfare programs were enacted, people relied on family and charities as needed. With few exceptions, thats the way its going to be again. The government has no moral right to take money from those who have worked hard to provide for their own medical and retirement needs to care for those who for any number of reasons (whether sheer laziness, lack of discipline or bad luck) have not. Actions have consequences.
To Concerned Parent:
I am well aware of the distinction. The salient point is that when medicaid is funded, it is funded as a shared responsibility between state and federal government.The monies come out of a general medicaid fund and associated budget. By overloading the Medicaid rolls with well earning families, the cuts are then made targeting the disabled. This is just wrong. the responsibility for abusing Medicaid lies with the government, the community and ultimately physicians and hospitals that have benefited hugely from the program. We should not be overloading the Medicaid rolls with people who can well afford to buy basic insurance.Our disabled loved ones will always pay that price. As a physician who cares for many disabled families, this is a terrible omen and sign of where the cuts will lead. The cuts need to be in fraud prevention and inappropriate enrollment to any takers.
I am the parent of a CHILD who has the medicaid WAIVER – we are not on welfare & we have medical insurance – our private medical insurance (which we pay dearly for) is my daughters PRIMARY medical insurace – as is the other CHILDREN who qualify for the medicaid waiver that I know –
we do utilize the program for HELP with things like therapies for my child & equipment due to her NUMEROUS medical issues (that our private insurance will not cover) my CHILD is only 8 & I shudder to think what her life will look like when she is 18 or 28 or 38 – if the expected cuts go through – Will I no longer be able to care for my child in my home????? Will my ONLY obtion be an instituion??????
BTW families & charities are not limitless sources of financial assistance
Some of the comments on here are very disturbing to me – walk in my shoes then tell me I will have to make do!!!
126,000 disabled people receive services in NYS. There are many more healthy people sponging off of medicaid and who knows where the numbers are in fraudualent practices. Services for the Developmentally Disabled should not be cut to fund that. Medicaid fraud will save much more money than these services. Where are we as human beings if we go back to Willowbrook? As parents we need to be very vocal, GET INVOLVED. These services are not luxuries! Entire families will be in jeopardy if services are cut. Does the Governor think parents are at the pool while their disabled children get services? We are right there also caring for our children but we need some help. If the services for the disabled were understood by the general population they would realize that these services are a drop in the bucket compared to the needs. Our children don’t deserve a substandard quality of life. NYS needs to go after the individuals and organizations involved in medicaid fraud. That is where the money is being wasted, not a once a week bowling program for special needs children.