Like many elderly people without assets in New York, Mr. R might lose his home of forty years and wind up in a nursing home—where he does not want or medically need to be—without well-orchestrated intervention. Few might have predicted that Mr. R, a World War II veteran, who had a successful career as a musician and visual artist, would have ended up in such dire straits. As a teenager in the 1930s, he was selected as an apprentice illustrator for Disney. Legend has it that he helped illustrate Snow White when he was still in his teens. Years later, he composed symphonies performed at Carnegie Hall. Yet, at the age of 89, after the passing of his domestic partner and the subsequent loss of her income, Mr. R found himself out of money, with but a few cans of food in the pantry, and facing an eviction. Mr. R has severe dementia and has been living in his Murray Hill apartment with 24-hour Medicaid home care. With rent arrears rapidly accruing, utility shut-off notices in effect, and home care in jeopardy following a default on a fair hearing scheduled by family who didn’t show up, it seemed that he might have to live out his remaining days in a nursing home. Mr. R’s story and others like it have provided the impetus that inspired the Vera Institute of Justice to create the Guardianship Project.
Our population is rapidly aging. Between 2010 and 2025 the number of Americans over 65-years-old is expected to increase by 60 percent, reaching 64.3 million.1 In New York state alone, the elderly population is expected to grow by 43 percent between 2010 and 2030.2 As people age or suffer the debilitating effects of illness, injury, or a disabling condition, some become unable to manage their own affairs. By 2050, as many as 16 million Americans may be afflicted by Alzheimer’s disease if a cure is not found.3 This demographic reality will mean that our already under-resourced justice and social service systems will face a mounting strain as they seek to provide critically-needed services to increasing numbers of vulnerable people.
To protect individuals who lack capacity, a court with jurisdiction can deem a person incapacitated and appoint a guardian to oversee his or her care. Because there is no national model for guardianship, state courts determine its form. In New York, where there is no public guardianship system, judges typically appoint private attorneys to serve as guardians for people having no family member or friend willing or able to provide care. The governing statute for adult guardianship in New York is Article 81 of the Mental Hygiene Law,4 which mandates that guardians maintain their clients in the least restrictive environment possible. Fulfilling this charge is often time-consuming and requires knowledge across a variety of disciplines: real estate, law, social work, and health care, to name a few. Many private guardians working alone may lack the resources and spectrum of expertise needed to provide intensive services to this population, particularly when it involves the labor-intensive job of moving clients back home from institutions. Thus, without a guardianship model that equips guardians to meet their obligations under Article 81, there is a systemic mismatch between a fundamental tenet of guardianship law and the actual legal practice of guardianship in New York. It is vulnerable people who pay the price. Many incapacitated elderly who are medically stable enough to live at home spend the last years of their lives languishing in institutions, isolated and removed from their homes and communities—the very things that give a life meaning, and the things they had worked so hard to build.
In response to the gap in services for this population, the Vera Institute of Justice founded the Guardianship Project in 2005 to test a new model of guardianship. Using a holistic, client-centered approach, the project’s multi-disciplinary team of lawyers, social workers, and property and financial case managers delivers intensive guardianship services to each client. Each of these respective disciplines is crucial for maintaining clients in the community: fiscal staff manages clients’ finances, paying bills and taxes and creating budgets to maximize limited resources. Legal staff litigates to defend clients in eviction and foreclosure proceedings, represents clients in fair hearings, negotiates and settles lawsuits, and advocates for clients’ interests in guardianship and collateral proceedings. For property-owning clients, the property manager coordinates home repairs, secures reverse mortgages, sells and auctions properties, and rents out property units to generate needed income. Case managers visit each client at least once a month; they coordinate and supervise clients’ medical and home care, apply for public benefits, and create individualized care plans that take into account each client’s wishes to the greatest extent possible. When a client wants to—and is medically able to—live at home, the team goes to exhaustive and complex lengths to make this a reality.
By the time the court became involved with Mr. R, his situation was urgent. Because guardianship hearings can take months, the judge appointed the Guardianship Project as “interim temporary guardian,” so that staff could immediately apply for benefits on Mr. R’s behalf while awaiting the full hearing. Without a combination of public and private resources to close his budget gap, he could not remain at home, and all signs pointed to a future life for Mr. R within the four walls of a nursing home. To further complicate matters, Medicaid—which has recently tightened its belt on community home care hours, ironically forcing many people into nursing homes where both the level of care and cost are higher—recently revoked Mr. R’s home care, recommending institutionalization. And while Mr. R is still physically robust enough to climb the four flights of stairs to his walkup apartment, due to his dementia, he cannot live at home without 24-hour care.
The Guardianship Project willingly tackled the seemingly insurmountable odds in this case. Once appointed, the project’s fiscal team immediately reworked his monthly budget to make the most of his $911 monthly Social Security—his only income. His case manager secured food stamps and a Home Energy Assistance Program grant to cover his energy costs. After extensive research on public and private grants for which Mr. R might qualify, staff located and applied for many other entitlement programs and submitted applications to private foundations, most of which specifically support elderly artists and musicians. One grant application has resulted in a tentative commitment of private funds, and if approved, will provide ongoing monthly income to fill Mr. R’s budget gap. If monies come through to support his ongoing expenses in the community, the legal team will in turn apply for a Human Resources Administration grant that covers arrears for people who can demonstrate ability to pay future rent.
In the meantime, project attorneys have represented Mr. R in housing court and reached a settlement dismissing the warrant of eviction that had been issued and staying further actions until the guardianship hearing is concluded. The legal team has also scheduled a Medicaid fair hearing where they will advocate for his continued home care, which until then will be maintained at its present level. Although the various grant applications, eviction proceeding, and Medicaid home care status are still pending, it now looks very likely that Mr. R will be able to remain safely at home, surrounded by his paintings and the countless cassettes of his music—markers of his fascinating life.
As the story of Mr. R shows, complying with Article 81 and honoring a legally incapacitated person’s wish to remain at home, is often a complex and multi-disciplinary undertaking, best accomplished by a team of professionals with a diverse expertise. Maintaining clients at home often entails navigating not only protracted bureaucratic entanglements, but also complex interpersonal ones, in many cases involving family and others who may not have the client’s best interests at heart. Through its intensive client-centered team approach, the Guardianship Project meets this challenge every day, having consistently succeeded in maintaining one-third of its clients in deinstitutionalized settings, including private residences, adult homes, and assisted living facilities.
Living at home is not only more humane for clients, but it also generates substantial Medicaid cost-savings for the state. For example, Medicaid-funded nursing home care in New York City costs, on average, $112,000 per year; at approximately $81,500 per year, 24-hour Medicaid home care costs significantly less. By enabling clients to remain at home, or returning them to the community from institutions, the Guardianship Project saves the state approximately $2.5 million per year in Medicaid expense, serving 111 clients. If the project were scaled to serve 2,000 clients, the Medicaid cost-savings could reach as much as $43 million.
It is not, unfortunately, always possible to fulfill a client’s desire for full independence because of medical or financial limitations, the inherent risks when proper services are not in place, or when the client engages in self-destructive behaviors. But in many cases, the guardian’s spirit of determination, creativity, and skill in leveraging multiple resources is what is really needed to overcome obstacles jeopardizing a client’s ability to remain at home.
It is time to make institutional guardianship services that actually move people home more widely accessible to those who need guardians, in order to protect the dignity and autonomy of people who, like Mr. R, can no longer care for themselves. After all, there are still thousands of incapacitated elderly people needlessly trapped in nursing homes, simply because there is no one able to help them move or stay at home. If we do not make systemic changes to guardianship care, the nightmare they are living may one day be our own.
Notes
1. In 2009, the U.S. Census Bureau projected that the number of adults over age 65 will increase from 40.4 million in 2010 to 64.3 million in 2025.
2. Cornell University Program on Applied Demographics, New York State Data Project by County, http;//pad.human.cornell.edu/counties/projections.cfm. According to the Cornell University Data, the number of adults over age 65 will increase from 2,617,953 in 2010 to 3,618,598 in 2030.
3. Wood, Erica F. American Bar Association, Commission on Law and Aging, for the National Center on Elder Abuse, “State Level Adult Guardianship Data: An Exploratory Survey,” available at http://www.ncea.aoa.gov/ncearoot/main_site/pdf/publication/GuardianshipData.pdf.
4. Guardianship in New York state can also be established pursuant to Article 17A of the Surrogate Court Procedure Act, and is used typically in cases involving persons having a developmental disability or afflicted with mental retardation, generally children under the age of 18.