Preparing for the Waiver -- Outcomes That Matter

Mon, May 14, 2012

Mothers are amazing and with that in mind, we'd like share comments from one of those wonderful moms in New York City. If you have a child with special needs in New York City, then you likely know Margaret Puddington. If you don't, you should! The following are remarks by Margaret delivered during the Premier HealthCare full-day conference on May 2, 2012 during YAI's International Conference. Mrs. Puddington's remarks were in response to a keynote address on New York State's Person First Waiver by Gerald (Gerry) Huber, Acting Deputy Commissioner, New York State Office for People with Developmental Disabilities.

Thank you, Gerry, for your comprehensive, clear, and honest presentation. I think that if we had had such a straight-forward explanation from the beginning, the response would have been quite different.

As Gerry made clear, change is coming. We have no choice about that. It is driven by fiscal imperatives and by the Medicaid Reform Team (MRT) mandate that all Medicaid populations will have to go into managed care. So whether it’s an 1115 waiver or a 1915b-c waiver, there will be change.

As a parent, I’d like to tell you what we families are thinking about OPWDD’s plans for the future.


We think the OPW goals and objectives are wonderful. Who could oppose people choosing their lives and having good outcomes? Theoretically—theoretically -- the new waiver, whichever it will be, presents exciting opportunities to get the outcomes that families want, which are:

•    People’s needs must be met, especially needs for residential services, including 24-hour residential services. Also crisis and emergency needs must be met, as for example, when parents are hospitalized or pass away.

•    Providers must be adequately funded to deliver a full range of high-quality services.

•    We want choice of services and choice of providers.

•    We want person-centered services.

•    We want high-quality services.

•    We want coordination of all medical services, including hospital and urgent care.

•    We want an expanded and flexible menu of services -– keep what is good and add what is missing. Possibilities include:

        o    Supportive housing with more supports for people who want to live independently -- such as financial support for the rent and family support-type services. Some people don’t need staff but just need someone in an emergency.

        o    Alternatives for seniors who don’t want to to go to day hab every day

        o    Blended day service models -- mix and match -- work one day and attend the program four days

        o    Ability to join a Y or take a yoga class rather than be limited to OPW family support programs

        o    Alternatives to emergency room care: such as utilization of urgent care, encouraging Article 28 clinics to provide evening and weekend care, having doctors on call for residences

        o    Shared living with direct support professionals and others in the workforce

•    We want OPW to be strong enough –- to keep hold of the reins; to keep control of accountability, fiscal stability, quality and breadth of services

We see certain benefits of the People First Waiver:


•    Creative new service models

•    Care coordination: integration of health and long-term care services is especially important for people with complex needs

•    Emphasis on providing services early, before a crisis

•    Getting rid of certain unproductive regulations and agency policies

•    Finding savings through collaboration among agencies

•    Finding savings by reducing use of the emergency room

•    Facilitating services across systems

BUT the People First theory collides with an ugly fiscal picture.

•    As Gerry explained,the economy is still perilous and will continue to be so for years to come. The wWaiver is at best cost neutral, no new money. We may even lose a significant amount of money.

•    OPW must serve new people. According to the OPW response to CMS questions, OPW plans to serve 33,000 more people via self-direction, shared living, allowing relatives to serve as staff, etc. Serving more people out of the same pot means cutting.

•    Plus the Governor’s new administrative cap to limit providers to 25 percent for administrative costs sounds good but is tricky: it depends upon what is counted as administrative costs. For example, education and training, supervision, and quality assurance are really programmatic, not true administrative costs (like payroll). This could be a sneak attack on funding for programs.

The people who created the People First waiver have the best of intentions, but the plan is so complex, with so many unknowns. This is a pioneering effort larger and different from other states’ experience. There is no successful fully capitated model for people with developmental disabilities.

A lot could go wrong. We’re entering foreign territory where everything is unknown and we can’t count on anything. Our entire system could implode.

What families fear --  What follows is a compendium of families’ concerns.  You may already have heard some of these.

At the core are fiscal concerns. Changing from a fee-for-service to a capitated rate for DISCOs that includes both long-term services and medical services causes serious worries.

•    As Gerry explained, ultimately rates will be based on individual needs, not historic program costs. Families are concerned about the adequacy of the assessment tool as well as the adequacy of rates. What if the rates are not adequate to deliver needed services? 

•    Families are worried because the rate includes both medical and long-term care. That could be devastating, especially in cases of unanticipated medical costs. A few years ago my son Mark was hospitalized for six weeks with pancreatitis. Such situations would reduce the pot. Families want separate capitated rates for medical and long-term services.

•    Under the plan DISCOs will ultimately bear full financial risk. In other words, if they have too many high-cost people, or extremely high medical expenses, they could lose lots of money, even go bankrupt. Families don’t want the DISCO to bear full risk. They want limited risk or stop loss where the DISCO won’t have to lose more than a certain percent before being bailed out by the state or insurance or whatever.

DISCOs would constantly face fiscal peril. We are glad that DISCOs are non-profit, but even non-profits cannot sustain big losses.

Families fear that to protect themselves fiscally, DISCOs might behave like typical for-profit Managed Care Organizations (MCOs) and do the following:

•    DISCOs might avoid having too many expensive people. They might want to cherry pick the easiest, least costly. But families want everyone to be served, and served appropriately, especially those with complex needs. There should be a zero-reject policy.

•    Care coordination could become care limitation. DISCOs might try to ration services, not give what is needed, as typical for-profit MCOs do. They might deny needed specialized services.

•    DISCOs could choose providers based on low-cost rather than on the best match, and they could refuse any out-of-network providers.

•    CHOICE would go out the window. We want choice, ongoing, not just for a year, as promised on OPW documents. And we believe you shouldn’t have to move heaven and earth to go out of network: A long-standing relationship with a provider should be justification in and of itself.

•    OPW has already drastically reduced residential development, particularly 24/7, and is relying on vacancies in existing residences, which may be inappropriate for many individuals because of their special needs, such as intense behaviors, blindness, emotional vulnerability. And we think there may not be as many vacancies as OPW predicts because even though our system is large, people with DD are living much longer now. OPW predicts 3,000 vacancies, which seems quite high. In addition, DISCOs may not want the expense of a new residence. DISCOs could be a huge barrier to APPROPRIATE residential placement. Families are terrified for their children’s future. This is their single biggest fear.

•    OPW is counting on family support services to sustain families during their very, very long wait for residential services. Families need to know there will be 24-hour residential development for those who need it. Families need to know there will be a sufficient amount of family support services –- not recreation once a week -– to sustain them. We worry that DISCOs could provide insufficient amounts of family support services or even cut back.

•    OPW documents are sprinkled with references to “personal responsibility” and “community solutions” and “natural supports.” Families suspect that the translation of those terms is really that families will be expected to shoulder the entire responsibility while the state abdicates its own responsibility.

•    OPW support for properties is questionable now. Lease renewals are not being readily approved, for example, and there is a definite push to get rid of properties.

•    OPW is looking to expand options for those who are more independent, which is great. But at the same time, they are closing down options for higher-needs people, referring to traditional IRAs and day habs as “legacy services,” which means that these services will be terminated. The menu should be EXPANDED, not contracted.

•    Direct support professionals could be pawns in cost-cutting. Staff could be laid off, benefits and pay could be reduced. As every family knows, direct support professionals are the lifeblood of our services. Salaries need to go up, not down.

•    DISCOs could force providers to reduce their costs. Cost-cutting = reduction in quality

Regarding quality, families want to be sure that there is oversight of quality.

•    DISCOs are supposed to monitor quality, but will they? They have a conflict of interest here. If they cut reimbursement to the provider agencies, then providers may be forced to reduce their standards -— less staff, less staff training, etc.

•    OPWDD’s role is unclear. OPW’s own scaled-down workforce can’t do as much. Reliance on paper reviews only is not sufficient. Quality should be measured not just by data and satisfaction surveys, but by evaluation visits and observations. Outcome measures are not a sufficient gauge -— a person can achieve an outcome, say a job, but the support he is receiving may be mediocre or insufficient. It’s not clear yet what specific strategies will be used to measure quality. But it’s a concern.

Conclusion: Overall, there are no guarantees about any of the outcomes families care about. We could lose it all over fiscal issues—choice, person-centeredness, adequacy of breadth and range of services, quality of services.

Managed care and capitated rates are going to happen no matter what. The good thing is that we families can be part of the solution. We can share our concerns and our ideas. OPW has provided tons of information on the web, and has periodic briefings and forums. There is much opportunity for families to stay informed. So we families need to be involved, stay involved, go to meetings, regularly check out the OPW website which is loaded with information, participate in every opportunity to give input. We parents and self-advocates and providers do have a seat at the table. We need to fill it and use it.