Gotham Gazette

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Advocates For The Ill

When illness strikes, middle-class patients and their families can quickly slip into poverty. As they struggle with the impacts of sickness, such as pain, changing family roles and changing work situations, they may not know that they are eligible for support that could prevent further financial decline.

Patients already poor could become even worse off.

This is why a shadow industry has emerged to let ill people know what public benefits they are entitled to, to help them fill out applications, even to communicate with government caseworkers when things go wrong.

Finding a trained advocate is often the only thing that keeps a family together in their own home. However, many agencies serve only a slice of the population with specific characteristics, so another large part of what they do is “information and referral,” often between one another.

Housing Works is one of dozens of agencies serving the HIV+ population. Its case managers, among their other duties, struggle to get the city’s HIV/AIDS Service Agency to fulfill its mandate to coordinate services for their clients.

• People with other specific diseases or conditions may turn to specialty organizations, such as Cancer Care, Inc., which employs 50 social workers trained to help cancer patients deal with the emotional, financial, and medical effects of their illness.

• Independent living centers help low-income people with disabilities to apply for social security benefits and similar income supports, and navigate agencies and courts concerned with such major life issues as child welfare and housing.

• Immigrants, descendants of different ethnic groups, and subgroups of these populations have their own social service agencies. For example, Blue Card was founded by Jewish refugees in 1939, and is still helping low-income Jewish Holocaust survivors to cover the gap between inadequate incomes and the rising cost of living.

• Supportive housing providers not only house residents with mental illness or substance abuse histories. They also provide rehabilitative treatment and coordinate residents’ public benefits and other social services.

• Many senior centers have social workers on staff to help members get the benefits they are entitled to. They sometimes report having a hard time convincing impoverished elderly people to apply for food stamps, due to the stigma attached to “welfare”.

Every hospital employs “discharge planners,” usually social workers, whose role includes making sure that after a hospital stay, patients have a place to go home to, and someone to help them with everyday tasks, if necessary. Single parents who can manage their own daily lives may need a homemaker for their children. Poor people may need help applying for Medicaid so that they can afford follow-up health care.

However, once the patient is back home, the hospital discharge planner is rarely involved in making sure that services work as planned, or that they change to meet changing needs.

When a government agency denies an application for benefits or services, or reduces or ends existing services, legal help can be needed to reverse the decision. Each government agency has an appeals process that, in theory, does not require a lawyer’s assistance. However, layers of inadequately trained personnel separate clients and their advocates from the officials who judge their appeals. It can be equally difficult to learn the process of appealing a decision that denies services, to gather documents and successfully present a client’s case, and to compel an agency to comply with a hearing officer’s decision in the client’s favor.

The New York Legal Assistance Group launched the LegalHealth project in September 2001 as a response to the complex needs of people with serious and chronic illnesses, and low-income patients needing medical care. Since then, they have directly helped more than 600 patients, and trained over 1,000 medical professionals and social workers how to identify and deal with the legal problems of low-income, chronically ill patients.

A typical LegalHealth client is a cancer survivor who missed a Medicaid appointment while she was in the hospital for treatment. The missed appointment triggered a halt to her welfare benefits, which could have prevented her from paying rent and resulted in her family becoming homeless, not for the first time. She also was required to go to Family Court to be a witness in a child support hearing, despite her severe illness.

The New York Legal Assistance Group successfully appealed the cutoff of her welfare checks, accompanied her to Family Court to ensure that proceedings went as quickly as possible, helped her draw up a will providing for legal guardianship of her young son, and assisted her with income tax problems.

Linda Ostreicher, a former budget analyst for the New York City Council, is a freelance writer and consultant to nonprofits.

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