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 NUMBER OF STATE INSTITUTIONAL PSYCHIATRIC BEDS, which were once the primary setting for psychiatric treatment, has gone down dramatically nationwide. Community psychiatric hospitals, private hospitals, and nursing facilities filled the gap in the 1980s and '90s, but inpatient capacity in these settings, too, has recently been on the decline. There is widespread concern — given ample voice by the media — that we need to restore our nation’s psychiatric bed capacity, both to reduce the risk of violence perpetrated by people with untreated mental illness, and for their own safety and health.
In reality, however, inpatient treatment should form only one part of a robust system of mental health care. For comparison, note that treatment for even the most serious medical conditions now frequently occurs in outpatient and in-home settings. However, recent findings from the Healthcare Cost and Utilization Project reveal a widening gap between our country’s approaches to hospitalization for mental and for physical health conditions: Between 2005 and 2014, the rate of inpatient stays per 100,000 people for all causes decreased across all age groups, while the number of hospital stays for mental health/substance use actually increased by 12.2 percent.
To examine these trends and their implications, the National Association of State Mental Health Program Directors recently commissioned a series of working papers on the question: “What is the real need for inpatient psychiatric beds in the context of a best practice continuum of care?” In this series, researchers and policy leaders describe ways to improve mental health and substance use disorder treatment at many different points in a community’s system of care so as to necessitate fewer psychiatric hospitalizations, of shorter duration, with better and more equitable outcomes.
Increasing the number of psychiatric inpatient beds is not the solution in most communities. As my colleague Kevin Martone and I argue in our contributions to the series, investments in care and services can create alternatives to inpatient beds that are both more effective and less costly. “Beyond Beds: The Vital Role of a Full Continuum of Psychiatric Care” lays out specific public policy recommendations to minimize the human and economic costs associated with severe mental illness by building and invigorating a robust, interconnected, and evidence-based system of care. And as “The Role of Permanent Supportive Housing in Determining Psychiatric Inpatient Bed Capacity” shows, stable and affordable housing combined with voluntary services can contribute to improved outcomes in both physical and behavioral health, while reducing incarceration and homelessness. Furthermore, the cost of serving a person in supportive housing is half that of a shelter, a quarter that of incarceration, and one-tenth the cost of a state psychiatric hospital bed.
Advances in medical research and technology, chronic disease management programs, and alternative treatment settings such as walk-in urgent care centers — along with payment approaches that support medical care in outpatient settings — have all helped reduce hospitalizations for physical health conditions. Evidence-based mental health care options, especially when provided in the communities where people live, offer the potential to bring down psychiatric hospitalizations as well. Private insurers rarely cover these services, however, and state and federal mental health funding are drastically insufficient to meet demand. Medicare and Medicaid together fund approximately 60 percent of inpatient care in the United States. Unfortunately, Medicare funds very few evidence-based mental health practices, and Medicaid funding for housing transition and tenancy-sustaining programs — a critical component of permanent supportive housing for people with mental health disabilities — is not yet fully incorporated into services.
We don’t need to re-create massive numbers of psychiatric inpatient beds. Rather, policymakers must prioritize funding for the evidence-based preventive treatment and services that people with mental illness need and desire. With these effective and cost-saving resources available and truly accessible in every community, hospitalization will play an appropriate role in a balanced system.
MANY PEOPLE WITH SERIOUS MENTAL HEALTH CONDITIONS (SMHCs) need employment income in order to meet their basic needs and live independently in the community. However, challenges both in finding and in keeping a job have kept unemployment and underemployment rates high in this group. “Supported employment,” an evidence-based practice in which service providers help a person find and hold a competitive job, is a valuable resource. Yet even people who benefit from this approach may struggle to attain financial self-sufficiency if their jobs are low-paying or part-time, especially if these positions don't qualify them for workplace benefits like health insurance, disability insurance, and paid time off.
While employee readiness is important, there are many other factors that can boost job longevity and success. By prioritizing these alongside employee readiness, we can create the conditions for long-term, sustainable employment. For instance, the potential value of social capital, or “the collective value of social network connections and resources that generate instrumental, informational, and emotional support,” has not yet been fully recognized. Strong social capital increases job satisfaction and retention for everyone — including employees with serious mental health conditions.
Organizational Social Capital
In addition to personal social capital, which includes the support and encouragement of close family, partners, and care providers, the role of organizational social capital is also critical. Organizational social capital refers both to positive social relations with supervisors and coworkers, and to policies and practices that promote healthy workplace norms — features strongly influenced by the culture of each specific workplace. Even an employee with the best job coach in the world can be derailed by an unfriendly or toxic work environment in which they experience discrimination, stigma, unclear expectations, or a murky and difficult process for requesting reasonable accommodations. As these are areas over which employers, not employees, have the most control, organizational leaders who want to help workers with SMHCs to thrive and contribute should consider introducing specific changes in workplace culture.
A Better Workplace for All
So how can employers impact workplace culture to support people with SMHCs? Usually, this shift is facilitated by changes in the areas of onboarding, supervision, and the process for requesting and providing accommodations. Wellness initiatives and SMHC awareness trainings can give all staff good information and tools to meet challenges as they arise, while making the workplace better for everyone. To support these initiatives, employees’ assumptions must be addressed, with leaders taking the important step of directly challenging stereotypes of people with SMHCs as incapable or helpless. Managers will need first to educate themselves, and then to follow up by issuing directives, changing job expectations, offering trainings, and endorsing the efforts of successful supervisors.
People with serious mental health conditions who don’t receive benefits or subsidies need jobs that pay a living wage and that provide crucial workplace benefits. Unfortunately, too many with SMHCs struggle to find and keep such jobs in workplaces unequipped to support their natural resilience. Fortunately, the changes that can lead to sustainable employment for people with SMHCs — such as individualized and regular supervision, efforts to reduce stigma, and efficient approaches to reasonable accommodation — are readily achievable. Furthermore, these shifts are likely to benefit organizations overall.
Future Access blog posts will take a closer look at important elements in sustainable employment. Meantime, find out about TAC's trainings for behavioral health organizations and agencies working with peer specialists.
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.