Access: The TAC Blog
Last week, I had the pleasure of delivering the keynote address at the annual conference of the Supportive Housing Association of New Jersey. This gathering marked the association’s 20th anniversary, an opportunity to reflect on two decades of work to make permanent supportive housing — i.e., lease-based housing paired with voluntary, flexible services — a primary intervention for people with a wide range of disabilities and for people experiencing or at risk of homelessness. Many other states, too, have invested time and resources in the successful expansion of this approach for their homeless and disabled populations.
In an interesting fluke of timing, the New York Times had published an article the day before the conference, highlighting negative stories about permanent supportive housing (PSH) in New York and painting a picture of a model that had too often failed persons with serious mental illness. The tone of the article was keenly felt by this group of PSH practitioners, and several leaders from other states and policy groups have since contacted me to discuss the article’s potential impact. How could PSH — an approach that leaders in many states are working to expand in order to support the community integration needs of those who are homeless or disabled — be represented as a failure? What are the article’s implications for those seeking to invest in or expand PSH, for providers, and for people determined to live independently?
While the Times article was alarming, strong evidence nevertheless suggests that people with serious mental illness can succeed in PSH, and that use of the model should indeed be expanded. But there are considerations that must be addressed to ensure that PSH meets the needs of the people it is intended to serve.
Supportive Housing Works
People with serious mental illness have historically lived in institutional settings whether they actually needed to or not. Over time, however, understanding has grown that the policy of housing people in state psychiatric hospitals, for example, is both cost-ineffective and inhumane, and that it fails to demonstrate positive outcomes. Deinstitutionalization efforts from the 1970s to the 1990s meant that many more people with mental illness began living in the community. We all know the story of the resulting growth in homelessness and trans-institutionalization to correctional settings, as public systems failed to develop their community-based services capacity and affordable housing resources to meet the increase in demand. Some people had access to services and residential supports, but many did not, and many still do not today.
When I was a case manager over 20 years ago, "supportive housing" meant doing everything possible to get people with mental illness into housing and helping them stay there. Over time, anecdotal stories of success across the country evolved into an evidence base for what we now know as permanent supportive housing.
There is plenty of evidence to demonstrate the effectiveness of PSH for people with mental illness and for people transitioning from homelessness. Many PSH programs have shown increased housing stability, decreased emergency department and inpatient use, reduced jail days, and significant cost savings compared to homelessness, inpatient care, and other institutional or supervised settings.
Even the statistics noted by the Times suggest that a large majority of people have succeeded in supportive housing. It is important to regard this in light of evidence showing safety and quality of care concerns in New York's adult homes, the housing situation from which many people with mental illness move into supportive housing.
Services Must Be Well-Designed and Adequately Funded
Does supportive housing work for everyone? No. Some people need supervised treatment settings, or prefer group residential programs. However, contrary to the assumptions that used to govern our mental health care systems, supportive housing in the community has been shown to work for a variety of people, including those with the most significant needs who are transitioning from state psychiatric hospitals, nursing facilities, jails, or homelessness. Even people with the most complex conditions need a place to call home that is not contingent on being a "compliant" patient or a "good" client; in fact, providing a choice of housing together with voluntary services has been shown to strengthen retention in housing and services.
In order for PSH to be successful, particularly for persons with complex needs, services must be voluntary, flexible, responsive, robust, and comprehensive. Furthermore, they must be delivered by well-trained staff who are able to provide the right types of services, in the right locations (i.e., where people live), and at the right times, adapting what is offered to meet individuals’ evolving needs. Providers that struggle to adequately support people in PSH are often those with inadequate staffing, which makes them unable to respond quickly and appropriately.
To underfund services is to undermine the ability of providers to meet the needs of PSH tenants. In my experience, the services covered by Medicaid are not, on their own, enough to meet the needs of many people who could otherwise succeed in PSH. If systems will be expected to serve an increasingly complex population, state and county funding agencies and Medicaid managed care organizations must have adequate resources available to pay for a full range of services; successful permanent supportive housing programs are those that braid or blend Medicaid with other resources.
Building On the Evidence
As a former state mental health commissioner, a behavioral health provider, and the family member of someone with a mental illness, it boggles my mind that we would rather pay several hundred thousand dollars per year to house a person in an institutional setting than commit a fraction of that amount to support them in an integrated, community-based setting with demonstrated positive outcomes. Too often, the response to challenges that arise in PSH is an assumption that a person is "not ready," or "needs supervision," instead of a person-centered mindset that tailors and continually adapts services to each individual’s needs and choices.
Yes, people with mental illness and other disabilities may need inpatient treatment, at times. They may need round-the-clock support, at times. They may need assistance with their medications, at times. They may need transportation to medical appointments, at times. People with mental illness and other disabilities may need lots of things — but that doesn’t mean we should return to institutionalization at a cost that is much greater than the sum required to meet all of those needs. With sufficient resources to pay for both rental assistance and robust, flexible services, permanent supportive housing can be a primary intervention for individuals with complex needs.
Systems should move forward on bringing well-designed, fully funded permanent supportive housing to scale, so that all who can benefit from living in safe, independent, community-integrated housing have the opportunity to do so.
The Trump administration’s interest in addressing the opioid epidemic is heartening, and last week's proclamation is a welcome acknowledgment that opioid addiction and overdoses do indeed constitute a major public health crisis in our nation. While there is no immediate prospect of a significant cash infusion (millions are touted, versus the badly needed billions) to address the crisis, there has at least been the promise of statutory and regulatory relief — with a particular focus on allowing states to waive the Institutions for Mental Diseases exclusion. This 52-year-old statute bars Medicaid payments for mental health and addiction treatment provided to individuals in large treatment facilities, and some advocates assert that waiving it will allow Medicaid funds to flow for thousands of substance use disorder (SUD) treatment beds that currently lie empty.
All efforts to expand access to treatment are important, but the push to open up large facilities for SUD care as the first priority should be kept in perspective. Empty beds in such institutions may be the result of many causes. For instance, a community with a strong array of community-based treatment options may not need additional beds. In some cases, beds go unused if private payers don't refer patients to a facility because it lacks a modern, evidence-based approach to treating addiction (for instance, if no-one on staff is qualified to provide medication-assisted treatment). And finally, some facilities have never participated in either Medicaid or commercial insurance programs simply because they don’t have to, as their private fee structure allows them to maintain empty beds; these providers may have neither the financial motivation nor the business operations know-how to bill insurers, or to train their staff to meet the quality standards of states and commercial payers.
So, states — before you rush off to the Centers for Medicare and Medicaid Services asking for IMD waivers, make sure your request is going to make a true difference in getting people high-quality care. We won’t turn this crisis around by assuming that any treatment is better than no treatment.
March 2017: Two Olmstead Settlement Agreements Resolved, but the Future of Community Integration is Unclear
DEPENDING ON WHOM YOU ASK, an Olmstead settlement agreement can be a blessing or a curse. While the parties typically agree on the principle affirmed by the U.S. Supreme Court — that people with disabilities should live in the most integrated setting possible — costly housing markets and complex service delivery systems are formidable barriers to this goal. More than 15 years after the Supreme Court's landmark Olmstead decision, states still struggle to serve people with disabilities in integrated settings.
Delaware and New Jersey are two states that have recently resolved their Olmstead settlements, achieving significant reforms though years of dedicated effort — Delaware's settlement was originally signed in 2011 with the U.S. Department of Justice, while New Jersey's was signed in 2009 with Disability Rights New Jersey and the Bazelon Center for Mental Health Law.
Thanks to the successes of these states in substantially attaining the outcomes required by their agreements, thousands of people with serious mental illness now have the opportunity to live in integrated community settings. What is perhaps most impressive is that a substantial part of the system reform accomplished by New Jersey and Delaware occurred during the great recession (2007 to 2009) and the following period of slow economic recovery.
Delaware and New Jersey both offer good examples of what is possible when states focus on community integration for people with mental illness and other disabilities.
A U.S. Department of Justice press release describes some of Delaware’s most significant gains. The state reduced the number of bed days in the Delaware Psychiatric Center by 47.2 percent. The number of Medicaid-eligible Delawareans receiving community-based services has increased by 92 percent since the United States began its investigation. The state has seen the growth of a strong peer and self-advocacy movement that is now incorporated into its entire service system. Two statewide mobile crisis teams and a crisis walk-in center divert 70 to 90 percent of the individuals they engage away from hospitalization and criminal justice interaction and toward community-based services.
As a press release from Bazelon details, New Jersey’s settlement also brought about important changes. Between 2005 and 2016, New Jersey invested nearly $104 million in services and rental assistance for Olmstead-related activities. The state also established a $200 million special needs housing trust fund, and created nearly 1,500 new permanent supportive housing units through capital and rental assistance. New Jersey’s state psychiatric hospital census was reduced by a third, patients’ average length of stay went down, and one state hospital was closed — changes that allowed state hospital operating funds to be reinvested in community supports. New Jersey created a Medicaid benefit to fund community support services for residents of supportive housing, and leveraged additional Medicaid money with investments in community-based services.
Both Delaware and New Jersey used their Olmstead settlement agreements as a driver for change, embracing a community integration platform to guide them toward significant behavioral health system reform. These states recognized that without sustainable system reform and new resources, counting numbers to achieve settlement targets wouldn’t bring about the changes needed to serve people with serious mental illness effectively.
Commitment to Olmstead in a Changing Landscape
Across the country, Olmstead stakeholders are raising questions about the future of community integration for people with serious mental illness and other disabilities. Doubt surrounds the capacity and motivation of states to tackle Olmstead in the years ahead; the commitment of the Department of Justice to focus on Olmstead as strongly as it has in the past; and the ability of protection and advocacy organizations to hold states accountable.
Changes to the Medicaid landscape at the federal level could put at risk the types of benefits coverage that makes community integration work for people with disabilities. Looming cuts to non-mandatory discretionary budgets, such as HUD housing assistance programs, may further jeopardize the ability of states to support community integration.
The Department of Justice has been instrumental in the movement toward community integration, enforcing Olmstead by leading investigations, entering into settlement agreements in several states, and intervening in support of class actions. If the Department shifts its attention to other priorities established by the Trump administration, individuals with serious mental illness and other disabilities will be left without civil rights enforcement at the very time when loss of benefits could place them at greater risk of institutionalization. Many state protection and advocacy agencies, as well as legal services organizations, have the authority to bring class action lawsuits on behalf of people with disabilities, and these groups may be called upon to step up their efforts.
Complying with Olmstead will become increasingly difficult if federal policy and budgetary changes reduce support to states in the near future. Federal cuts currently under consideration would put people with mental illness and other disabilities at greater risk of institutionalization and homelessness due to thinner benefits and services and reductions to the rental assistance that can make housing affordable. Our February blog post on budget impacts explained the challenges states will face in making resources available to meet federal requirements. Nevertheless, it is states that are on the hook to ensure that individuals are served in integrated settings.
Community integration mandates in the Olmstead decision, Title II of the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act are still the law, regardless of fluctuations in federal enforcement and support. Furthermore, serving individuals with disabilities in integrated, community-based settings is good, cost-effective policy. With these facts in mind, states should continue to design and implement Olmstead plans that build sustainable, system-wide improvements. The benefits — to individuals, communities, and all who recognize the value of true integration — are well worth the challenges.