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SUGGESTED TALKING POINTS OPWDD Forums for Public Comment on Section 1115 Medicaid Waiver

Earlier this year, New York State embarked on a course toward a new arrangement with the federal government for future Medicaid funding of services for people with developmental disabilities. The state forwarded a "concept paper" to the federal Centers for Medicare and Medicaid Services (CMS), expressing its intention to formally apply for the waiver in the coming weeks. The concept paper was drafted with input from OPWDD, the state DOH (officially, the state Medicaid agency) and approved by the executive chamber for submission to CMS. While the waiver negotiations are yet to get under way, OPWDD Commissioner Courtney Burke has scheduled a series of public forums to solicit input from New Yorkers ­ individuals receiving services, parents, family members, providers, all others ­ as to what the new waiver should look like. The schedule of the Commissioner's Forums is:

New York City, May 25, 2011, at 75 Morton Street (Note: three sessions, register for one) 10:00 a.m. ­ 12:00 p.m. 1:00 p.m. ­ 3:00 p.m. 4:00 p.m. ­ 6:00 p.m. Rochester, June 2, 2011, at the National Museum of Play, The Strong 1:00 p.m. ­ 4:00 p.m. Schenectady, June 6, 2011, at 500 Balltown Road 1:00 p.m. ­ 4:00 p.m. Video conference to multiple locations, May 31, 2011 1:00 p.m. ­ 4:00 p.m. Sites established in Long Island DDSO, Broome DDSO, Sunmount DDSO, Taconic DDSO, Hudson Valley DDSO, and Western New York DDSO

OPWDD is seeking to focus input from the public by posing these four questions:

1. How can we further break down barriers and support people to live truly integrated lives in the

community?

2. What do families need to better support their loved ones at home?

3. What reform ideas do you have to help us operate more efficiently so that more funds can be

directed to the services and supports people's need to be healthy and engaged in meaningful work and activities? good health, positive relationships, live in homes of their choice, and enjoy meaningful activities and employment?

4. What should we be measuring to tell us if we are doing a good job supporting people to have

NYSRA offers some bullet points that those wishing to attend these forums may wish to use. Keep in mind that registration is required to speak at the forums. (See OPWDD web site for the registration portal.) Those who do speak will be held to a two-minute limit. That is not a great deal of time, so people must make their points succinctly. It is our intention to assist by giving bullet points here that may focus comments. These are only suggestions. People who speak should feel free to say what they wish. Our mission here is simply to provide some thoughts that may be helpful. Question 1 ­ Breaking barriers/support integration Reforms that come with the new Waiver cannot leave people currently eligible for services left out of future services. HCBS services should be "folded-in" to the new Waiver. Eligibility for them cannot be compromised. Community integration relies largely on direct support workers. The workforce must remain strong, be well trained, and be given the resources it needs and deserves to ensure that individuals being served are given the proper supports so they may thrive in the communities. Individualized supports must be included in the array of services that are to be offered under the Waiver. Further movement toward reducing populations in the more "institutional settings" must be encouraged. Community settings bring community integration. Question 2 ­ Family needs at home The system must be able to assure quality and individual protections. Any efforts to maximize "efficiencies" and savings cannot be seen to sacrifice quality, safety and welfare of individuals, no matter the setting in which they are served. Significant attention must be paid to individuals in transition, such as those leaving schools and possibly in the school-to-work transition. The new Waiver must recognize the need to assist those households where a person receiving services may no longer be susceptible to home care as the best plan for them. The Waiver process must be open and transparent so as to ensure that families have ample opportunity to express their own, individual (and perhaps unique) circumstances. Efforts during the crafting of the Waiver will be far more successful than those undertaken after it is approved. Question 3 ­ Efficiencies that would enhance services Care coordination could help ensure that people with multiple needs have their needs met, while at he same time cost-efficiencies are realized through sound management practices.

Rationalization of reimbursement must be fully "rational." People have varying levels of need. A rational reimbursement system ensures that those with complex needs receive the care the supports that are necessary. This cannot be guaranteed if the reimbursement methodology does not take special needs into account. Although the movement toward managed care is a oft-articulated goal of New York's Medicaid Redesign in all populations, this cannot occur on an "at-all-costs" timeline. While there may be Medicaid managed care models for people with developmental disabilities in long-term care, none should be adopted until it is clear that people receiving services they need will not see withdrawal of any supports, and that the managed care environment does not sacrifice quality for savings. In designing the system, attention must be given to concepts such as "medical home" and integration of services in ways that work for people with developmental disabilities. Fiscal incentives that are available to states from the Affordable Care Act must be fully investigated and adopted if they can be used with no concomitant loss of quality. Consideration must be given to relative costs of different care settings, with those who can be guaranteed quality care in the lowest-cost settings placed in those settings. Consideration should be given to reducing unnecessary and costly burdens on providers, such as unneeded regulatory requirements. Providers also must currently devote precious resources to protect against unreasonable and unwarranted sanctions from entities such as the Office of the Medicaid Inspector General. Question 4 ­ Measurement Services that are utilized by large numbers of people through their own choices may be services that are working well. While popular choice may not be a flawless measure of success, the new Waiver should encourage choice and assess those services with high and low utilization rates as a gauge of effective supports. Services that can be provided with the least amount of required paperwork should often prove to be successful strategies. The greater the percentage of reimbursement levels that must be spent on paperwork, often, the less well-served the individual in the system. The teachings of experience and history should not be disregarded. Although converting the system to a new environment will necessarily mean much change and adaptation, care should be taken to preserve those services and supports that have proven themselves effective over time.

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