In 1971, I spent 6 weeks in a Long Island hospital psychiatric ward for severe depression, the beginning of my long and rewarding personal recovery journey. In the ensuing years, I learned hard lessons about the great limitations of traditional treatments and the critical role hope, dignity, work, self-care, spirituality and alternative treatments played in my healing.
Six years later, I took a job working as a ward aide at the state psychiatric hospital in Albany and got an expected but no less jarring introduction to a system that, based on the understandings of the time, told people they would never recover or work or have families, and that they’d be dependent on powerful medications with damaging side effects, living impoverished lives on disability and on staff direction for the rest of their lives.
When I struggled several years later as an outpatient clinician to prevent or understand people’s returns to the hospital, I was told there was nothing we could have done…that it was “the illness.”
Thanks to the recovery, rehabilitation and consumer/survivor movements, the field was encouraged to recognize every person’s great potential and the crucial importance of hope, of what we now call person directed planning, on skills and supports and a focus on full community integration.
But change has been very slow and our academic and state and local treatment institutions continued to predict and candidly, profit from this expectation of lifelong relapse and readmission.
It has taken national and state fiscal crises to bring true muscle to ‘transformation.’ This has been fueled by the recognition that these recurrent emergency and hospital costs for upwards of a half million New Yorkers with ongoing mental health, substance use and medical conditions swell Medicaid costs for those individuals to 15 times the average beneficiary and contribute to hundreds of millions worth of ‘avoidable readmissions’ each year.
We’ve at long last been joined by the often-highest forces in government, the Medicaid Director and the budgeteers, in wanting to help people to live in community. The new systems they and we are developing will:
- Bring in Behavioral Health Organizations over the next 2 years to improve hospital discharge planning in each region of the state for those individuals to try to improve follow up care and avoid readmissions.
- Create new integrated networks of medical, mental health and substance use providers called Health Homes that are aimed at helping to improve care engagement and performance for ‘high cost/high needs’ individuals.
- Move all of our outpatient and medication treatment systems by 2014 from pay per service systems to Managed Care styled systems that will cap Medicaid dollars but direct them more flexibly to meet health care improvements associated with a more integrated and accountable system that focuses on outcomes rather than service visits.
Will these changes improve the care and the lives of the half million New Yorkers who rely on that care? It might…but, in my mind, only if:
(1) Savings from decreased Medicaid and state hospital use are reinvested into key areas that research clearly demonstrates are central to preventing readmissions, stable housing, job readiness and support and a broad array of peer support. The state must not repeat the sins of the deinstitutionalization era and take too much savings without redirecting sufficient funds to build up improved community systems of care. It’s clear that hospital recidivism is closely associated with what are often called the social determinants of illness like housing instability, poverty and the loss of hope and personal supports. While those are not funded by Medicaid, they are critical to the success of these Medicaid reforms. Accordingly, New York must commit itself to creating reimbursement systems that transfer Medicaid and state hospital savings to these domains.
(2) Hospitals don’t run the new systems. Health homes and managed care reforms are heavily intended to help keep people out of needless ER and inpatient visits….in hospitals! But hospitals have deep pockets and strong political connections and are angling to run the new ‘community based’ alternatives to….. themselves. It’s critical that new networks are run by enlightened innovative wellness and recovery based medical and mental health/substance use providers who are major partners in any new networks or systems of care.
(3) A full array of peer run peer fidelity service innovations are prominent. Over the past decade, peer organizations in New York and nationally have birthed exciting and highly effective new models of outreach, engagement and health promotion (peer wellness coaching), hospital to community transitional support (peer bridging), personalized wellness systems (WRAP) and an array of relapse prevention and crisis assistance (peer crisis respite, ER workers, first break residential alternatives and warm lines). These are not services that can or should be operated by traditional providers; e.g. peers should not be embedded in traditional systems as assistant case managers who are supervised by social workers. And peers must not be considered cheap help who will get people to take their medications! Further, these services must not be co-opted or Medicalized by straight Medicaid funding. Accordingly, New York must fund and explicitly require managed care plans to contract with these groups to assure the provision of fidelity-level peer services that will play critical roles in improving outcomes while reducing overall systemic costs.
(4) We must move from person centered to person directed planning…and budgeting. There’s a lot of talk about person centered medical homes and person-centered treatment planning. But to move beyond just talk and ongoing practices that primarily continue to get people to sign off on provider generated treatment goals and plans, we must include training and oversight requirements that launch system wide use of tools that truly draw directly from individuals served, like Wellness Recovery Action Plans and Advance Directives. And there’s nothing in the country more powerful than self-directed care models that place pooled service dollars in the hands of consumers and assist them to buy the treatments and resources they need to get and stay well. Just look at the startling results several managed care pilots in Texas and Pennsylvania are having with individualized budgeting based projects supported by peer brokers at http://www.cmhsrp.uic.edu/nrtc/sdcwebpage.asp. The flexibility in these systems are allowing Medicaid beneficiaries unprecedented crucial access to alternative treatments that have been so crucial to my own recovery and are currently only the privilege of the middle class and the wealthy.
(5) Health care reforms must provide more than lip service to address tragic health care disparities. The state must explicitly direct managed care plans and new provider systems to provide the kinds of outreach, engagement and service strategies that will truly reach and work for communities of color and to diversify their workforces accordingly.
(6) People must be able to access the medications that work best for them. In the state’s plans to move Medicaid pharmacy to the control of managed care plans, there are no safeguards in place to assure that people will be able to stay with or get access to a medication they know are best for them, if that medication is not on the plan’s formulary. We must continue to assure open access to medications of choice that work for those who want and need them.
(7) OMH case management dollars must follow the people and not be lost to our system. Current plans are to move $120 million worth of OMH case management to become the care managers of the new Health Homes for the next two years, if only to capture a richer federal payment level provided under the Affordable Care Act. We must do so in ways that allow the people served by those case managers to retain those crucial relationships and supports and to follow them into the Health Homes. We must assure that OMH case management dollars return to our system after the two years and aren’t lost to other systems or state savings.
If we fail to adopt these kinds of measures and simply rearrange the players, provide insufficient clear direction to the new managed care systems that will take over and take huge savings out of the system without strategic reinvestments, we will squander this unprecedented opportunity to truly transform our systems of care and support.
Finally, too many of the most affected people know far too little of what is coming and the level of informed self-advocacy they must take to ensure these changes and these new service designs will work for them. New York must find ways to educate Medicaid beneficiaries and get their input as the ultimate stakeholders. For our part, NYAPRS is poised to launch a statewide series of regional forums on these topics. For more information, look at our website in the coming weeks at www.nyaprs.org.