Our Children and the 1115 Waiver: Why We Are Concerned

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Concerns with the People First Waiver Proposal:

Independence and Advocacy: Moving MSC into the managed care benefit package will impede the independence of service coordinators and thus, their ability to provide the advocacy needed by the children they represent, leading to serious, unintended consequences for this vulnerable population.
The High Price of Spending Cuts: While the State is basing the OPWDD shift to a Medicaid Managed Care service delivery system on a sensible approach to consolidating systems and services to save money, the path we are on threatens to negatively impact the care of developmentally disabled children and the families who care for them and may cost exponentially more than the current system.

Recommendation: We respectfully request that the State of New York initially exempt children from the initial roll-out of the OPWDD waiver. After the new system is in place and functioning, then we can make judgments about whether or not the proposed managed care organizations can work for our populations and, if so, how the rules need to be modified so that we can be sure highly fragile developmentally disabled children are not hurt by these reforms.

For more detail, read on.

Sick Kids Need Involved People (SKIP) of New York was incorporated as a 501 (c) (3) organization nearly 30 years ago to provide service coordination and advocacy for medically fragile, severely ill and/or developmentally disabled children throughout the State of New York. Our mission is to restore and maintain the primacy of home and family for these children, to get them out of institutions and hospitals to live as fully as they are able with the people who love them most. More than 150 SKIP case managers and supervisors help 3,000 children annually. We serve two-thirds of these children through Medicaid Service Coordination (MSC) under the auspices of OPWDD.

Background
In the face of rising costs and declining revenues, the State of New York has undertaken a top-to-bottom financial review of public spending. This is prompting an overhaul of the way Medicaid-funded services are delivered to New York residents with developmental disabilities through the Office of People with Developmental Disabilities (OPWDD).

Specifically, through the People First Waiver, New York is planning to move all OPWDD consumers into a managed care model for the Medicaid healthcare services they receive. The current proposal includes moving Medicaid Service Coordination (MSC), which was put into place 20 years ago to help people navigate a complex healthcare service delivery system so that they could access the help they needed to foster the best outcomes possible, into the managed care benefit package.

MSC is the core of what SKIP of New York provides for more than 2,000 developmentally disabled children in the State of New York. We advocate and arrange for the services their families need to care for them at home, where outcomes are better, children can grow and families can be together. More than half of the developmentally disabled children SKIP helps are also medically fragile, which makes the service coordination and advocacy we provide even more critical.

The support and services we put in place for families makes it possible for parents to work , raise their disabled children at home rather than hospitalize or institutionalize them, and provide for all of their children.

Concerns with the People First Waiver Proposal

Independence and Advocacy
Moving MSC into the managed care benefit package will impede the independence of service coordinators and thus, their ability to provide the advocacy needed by the people they represent. If a consumer is denied services that are deemed medically necessary by third parties, the service coordinator will be put in the untenable position of needing to advocate with the managed care organization with whom their MSC agency is under contract in order to fulfill their obligation to the consumer.

This is particularly critical for children with developmental disabilities, especially those who are also medically fragile, as the new system looks to complicate the already dense process that stands between people with developmental disabilities and the help that they need to develop to their fullest potential, to live at home, and in some cases, to stay alive. In addition, it is well documented that the help secured for children by service coordinators/advocates such as those who work at SKIP of New York forms the base of support family caregivers need to stay employed –to keep the family together, productive and “whole.”

As just one example, a SKIP consumer who is enrolled in Medicaid was prescribed private duty nursing services by a doctor, seconded by a nurse who independently assessed the need, and approved by a panel within the State Department of Health. The child was in a population being moved into Medicaid Managed Care. The managed care provider cancelled the authorization and subsequently denied the services. SKIP is advocating for this child and the family, ensuring that services ARE delivered while the case is adjudicated. Working with families to challenge denials of medically necessary services is a core part of MSC, and thus it makes little sense to make MSC part of the responsibilities of the very organizations issuing the denials.

The High Price of Spending Cuts
OPWDD services tend to be provided by a small number of large agencies. These are the groups that will consolidate to form managed care organizations. These large
agencies currently provide care primarily for adults with developmental disabilities. According to State estimates, of the 100,000 people OPWDD serves, only approximately 30% are children.

Although SKIP is the largest independent provider of Medicaid service coordination/case management in the State, serving 3,000 children annually (2,000 of which fall under the auspices of OPWDD), we serve a comparatively small number of people with a carefully tailored group of highly-specialized services. It is the larger populations and more common services that are driving this waiver reform. It appears that the population SKIP serves—developmentally disabled kids, and medically fragile developmentally disabled kids in particular—are not yet factoring into the changes under consideration.

The consequences for the kids SKIP serves of rolling out the managed care system as currently proposed are expensive and regressive—with the very real potential to cause dangerous outcomes.

When medically fragile developmentally disabled kids are unable to get the support they need, potential outcomes include: breaking up families unable to care for disabled kids at home; neglect or abuse; unemployment; foreclosure; an increase in people needing public assistance; a rise in institutionalization and hospitalization; and healthy sibling disruption.

The advocacy/service coordination that SKIP, and other similar organizations, provides has radically reshaped the options and raised the quality of life for these children and their families over the last thirty years. The possible disasters for our tiny corner of the OPWDD universe contained in rolling out this huge system transformation could undermine the entire effort. If we get it wrong for these children, the stakes are very high and very visible—as the Marchella Pierce case tragically reminded us all.

The bottom line is that, while the State is basing the OPWDD shift to a Medicaid Managed Care service delivery system on a sensible approach to consolidating systems and services to save money, the path we are on threatens to produce outcomes for developmentally disabled children and the families who care for them that will cost exponentially more (in a human as well as an economic sense) than the current system.

The Way Forward
We are respectfully requesting the State exempts children from the initial roll-out of the OPWDD waiver. After the new system is in place and functioning, then we can make judgments about whether or not the proposed managed care organizations can work for our populations and, if so, how the rules need to be modified so that we can be sure highly fragile developmentally disabled children are not hurt by these reforms.

We want to keep sick and developmentally disabled kids at home with family members who love them and want to care for them. We want to give these families the support they need to be whole, to thrive, to maintain the financial and emotional independence necessary to provide for their entire family. We want to help every sick and developmentally disabled kid get a chance at the best childhood and most productive life possible—to live independently and fully as contributing citizens of the State of New York to the full extent they are able. Exempting these children from the initial phases of the new Medicaid Managed Care organizations will ensure that the decades of hard work by this State to help these children and families have those lives will not be undone.

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Our Children and the 1115 Waiver: Why We Are Concerned

Concerns with the People First Waiver Proposal: