NH Officials Looking to Improve Relations with Area Agencies
By Alison Cohen, Special to the New Hampshire Challenge
After a rocky start, New Hampshire officials want to mend fences with the non-profit agencies it ignored as it began planning to move all its Medicaid beneficiaries with developmental disabilities into a managed care system.
While no one can—or will—say for sure what the role of the non-profit Area Agencies that currently provide long term care to people with developmental disabilities will be under Medicaid Managed Care, at least for the moment what was shaping up as an adversarial battle of wills has given way to a more cooperative, collaborative stance.
“The Governor appreciates the important role that the Area Agencies currently and will continue to play in providing critical services for individuals with developmental disabilities and acquire brain injuries,” said spokesman Marc Goldberg about Governor Maggie Hassan. “Area Agency representatives have been invited to present to the Commission on Medicaid Care Management, and their input and perspective will undoubtedly be included in any recommendations made by the Commission.”
This reversal comes after long bumpy ride that began during the Lynch administration and showed no signs of easing until a few months ago.
To understand how we got to this point, it helps to understand the role the Area Agencies have played in New Hampshire. For the last three decades, New Hampshire provided long-term supports and services to its citizens with developmental disabilities through contracts with 10 non-profit agencies that were dispersed around the state. The system, developed after Hampshire became the first state in the nation to close its institution for people with developmental disabilities, has been considered a national model.
What made the Area Agencies unique was that the each one has a Board of Directors made up of people with developmental disabilities, parents and caretakers. They set the parameters for the package of services that their Area Agency will provide. Each individual or family has a budget based on their needs and they work with a case manager to best determine how to use that budget to meet the needs and goals they have established.
This system stood in jeopardy when state officials declared that long-term supports and services to individuals with disabilities and their families wouldn’t be carved out of the managed care system that it plans to turn over to three commercial, for-profit health organizations. Initially, the Area Agencies thought they would be eligible to continue providing those non-medical services through separate contracts but were told that it was an all or nothing deal.
As originally envisioned, Managed Care would yield dramatic savings in Medicaid spending while maintaining the same level and quality of services through efficiencies, cost containment, an emphasis on preventive care and coordination of medical services. In a quest to wring maximum savings from the change from a fee-for service approach to a managed care with its flat, monthly payment per beneficiary, the state opted to expand Managed Care beyond acute medical services and include the higher cost long-term care into the mix.
Subsequently, no effort was made to involve the Area Agencies and the people who rely on their services. That created tremendous consternation on the part of individuals with developmental disabilities, their families and caretakers, who feared the Managed Care Organizations would cut back on the services that make it possible for people with disabilities to live and thrive in the community.
Parent Cathy Spinney says she has already experienced what it means when insurance providers with no experience in or understanding of disabilities substitute their judgment. Her existing health insurance company repeatedly tries to cut off her 31-year-old daughter’s physical therapy services. Her daughter, who cannot walk, receives weekly therapy to maintain her range of motion, flexibility and muscle tone. The insurance company thinks such maintenance is unwarranted and wants to eliminate the services since they see no improvement in her daughter’s condition.
“They see our children as broken and needing to be fixed,” Spinney said. “If they can’t be ‘fixed,’ their attitude is why continue to provide services.”
Once upon a time, that sort of thinking led to warehousing of people with physical and/ or developmental disability in large, isolated institutions where they received the minimal care and treatment. The move to community-based living with its focus on providing people with the supports and services that allow them to live the full, rich life everyone wants for themselves and their children.
Spinney, who also serves on the Board of her local Area Agency and as president of the New Hampshire Developmental Services Quality Council, is understandably passionate about the service delivery system she and her daughter rely on.
Families need the supports and services provided through the Area Agencies to allow them to continue caring for a family member while being able to work and participate in community activities themselves. They frequently cite as their motto, “nothing about us without us.”
Most importantly, the individuals with disabilities and their families are the ones making the decisions about the kind of life they want and the services that will make it possible. They very much fear that executives in an out-of-state organization that exists to make a profit for their stockholders won’t share that vision of normal life in the community where the cost of everything is the sole focus and the shared, value-based decision-making of the Area Agency model has no place in the equation.
If that was the fear, recent developments are letting folks breathe a little easier.
First, the election of a governor who is herself the parent of an adult child with significant disabilities made them think that the top official in the state would “get it.” That sense grew when she named several people they respect to the Governor’s Commission on Medicaid Care Management.
“The developmental disability community has great representation with Governor Hassan’s appointment of Don Shumway, Sue Fox, and Gus Moral to the Commission on Medicaid Care Management,” said Dotty Treisner, Interim Executive Director for Community Support Network, Inc. (CSNI). “All three have understanding and respect for the Area Agency system. Don, a former Commissioner for DHHS, Sue, a parent of a child with a disability and project Director for the UNH Institute on Disability, and Gus, President for service provider Independent Support Network all know that the current non-profit Area Agency system is ranked #2 nationally, is quality driven for positive outcomes, and is managed through family governed boards who are hands-on stewards.
According to Treisner, CSNI and the area agencies have met with the Governor, her executive staff, the Commissioner of the Department of Health and Human Services and the newly appointed commission on managed care.
“We are hopeful that this dialog takes into consideration the family call for no disruption in services or the de-valuation of long term continuity of care, as well as continued local control of services,” Treisner said. She described herself as being optimistic that although there may be disagreements ahead, the parties are all committed to a public process for working out what care management should be under managed care. She cited Shumway’s call for a more participatory, proactive approach.
“He suggested that the agencies and CSNI be proactive in helping to evolve the system for better coordination and consider alternate means to work with the commercial MCOs.” said Treisner. “Don indicated that change is inevitable and that stakeholders should get ahead of the curve by providing system solutions that work in cooperation with the MCOs.”
Equally reassuring from her perspective is a recent clarification by DHHS Commissioner Nick Toumpas, that the DHHS State Innovation Model, SIM, process, will inform the managed care design for long-term care and a promise that he would ‘not rule anything out’ including an alternate design that allows for a cooperative arrangement between the Managed Care Organizations and the developmental disabilities community.
“We are in the early stages. We are feeling like the Commissioner is open to relationships he was not open to previously, Treisner said, adding, and “The Commissioner indicated that there is no intent to dissolve a system that works well. A direct outcome of this meeting was to work with the Commissioner to remedy gaps in communication. We have been assured these efforts are works in progress and that no decisions have been made yet regarding the future of the Area Agency system. That being said, families who have control over the Area Agency system remain concerned that many questions exist while commercial MCOs have contracts.”
For her part, Spinney remains unconvinced that all is copacetic.
“I’m a skeptical person. My ability to trust is almost gone. First we were told that Managed Care was “not about you. Then the Area Agencies were invited to bid on providing long-term care. Once that was done, we were told in no uncertain terms that long-term supports and services would not be carved out,” Spinney said. “Now they are saying things like ‘nothing has been decided.’ All along the way we have been told things that turned out not to be true.”
Spinney emphasizes that she does not question that all of the parties involved are good and honorable people.
“I don’t see any malicious intent on the part of anyone,” she says, but adds that she doesn’t believe these companies that are used to managing acute health care know anything about delivering quality long-term supports and services to people with developmental disabilities and their families.
Spinney also says she doesn’t see how Medicaid managed care can possibly save money on long-terms supports and services for people with disabilities because the state has never fully funded the required programs as it is. Additionally, the Area Agencies’ administrative fees are all under 9% and some substantially so.
“We are being engaged now, but how much of that engagement is honest and not just window dressing, I’m just not sure. I don’t know if this is truly a negotiation yet,” Spinney said.
According to Spinney, many families feel the state’s managed care initiative is like a runaway train barreling down the track with no clear sense of what needs to be in place and what needs to be done. She desperately hopes the state will shift its gears and undertake a three-year pilot program to see whether the managed care companies with whom the state is contracting are able to provide the necessary long-term services and whether they can find the savings the state is counting on without limiting and eliminating supports and services that individuals and families rely on.
“I just want to be sure they understand that they are depending on families to provide care, housing, food, clothing for their family member with a disability and we need to be supported so we can keep doing it,” Spinney said. “We are making sacrifices here; we need to be treated with respect.
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