Trapping people with disabilities legally

By Kristin Booth Glen and Jennifer J. Raab

For 80 years, Hunter College has felt a special responsibility to people with disabilities. At our Roosevelt House Public Policy Institute — once Franklin and Eleanor Roosevelt’s home — the future president recovered from polio a century ago. It is here he learned to stand on crutches and steel braces, and to propel himself in a wheelchair, making it possible for him to re-enter public life. Eventually, he lifted himself up so he could lift the entire nation from the depths of the Great Depression.

But FDR would doubtless be shocked to learn that New Yorkers with developmental disabilities are still routinely denied their basic human rights, including the right to make their own decisions — rights that Eleanor Roosevelt championed in her own admirable career.

Although they have done nothing wrong, people with developmental disabilities are routinely placed under guardianship, stripping them of all their legal and civil rights. They can no longer make decisions about their own lives; only their court-appointed guardian has that power. Deprived of the autonomy we all take for granted, the National Council on Disability reports that guardianship negatively impacts their functional abilities, physical and mental health and general well-being.

Even if they are not put under guardianship, their capacity to make important decisions such as giving informed consent to obtain health care, choose to marry — or merely rent an apartment — can be challenged by public and private entities that arbitrarily refuse to recognize their ability to make contracts on their own.

To combat this problem, a groundbreaking project at Hunter College had been working for six years to enable people with both intellectual and developmental disabilities to make their own decisions with the support of trusted people in their lives.

The project, Supported Decision-Making New York (SDMNY), has proven transformative. Its effectiveness was recognized in legislation signed by Gov. Hochul on July 26 — not coincidentally the anniversary of the Federal Americans with Disabilities Act.

Now there is no more turning people with developmental disabilities aside just because someone — out of bias or ignorance — decides they don’t know what they’re doing. Again, New York and Hunter are standing at the forefront of protecting human rights.

But there is more to do. We not only need to spread the word that there is an alternative to guardianships for those who choose to utilize support in making their decisions — but also ensure that those affected learn how to make decisions on their own.

The state Office for People With Developmental Disabilities recently awarded SDMNY a three-year, $4 million grant to design and pilot a model that will make the process developed by SDMNY available to everyone in New York who wants it.

Meanwhile, SDMNY and Hunter’s School of Education have been developing a transformative curriculum that will ensure that all students — those with disabilities and without — learn how to make decisions, realize when they need support, and learn how to obtain it. With these tools in place, young people with intellectual and developmental disabilities can make guardianship a thing of the past. Drawing on this work, Hunter has just been awarded an $800,000, four-year grant to develop decision-making curriculums for early learners, middle schoolers and transition-age students.

Older people with cognitive decline, Alzheimer’s and the like are also negatively impacted by guardianship and the deprivation of their right to make decisions about their lives. Again drawing on SDMNY’s work, Hunter’s Brookdale Center on Healthy Aging is partnering with other aging organizations to identify and develop the supports that will enable older people to live out their lives with dignity and respect.

We need to confront these realities now. For one thing, America’s population is graying — fast. More than 16 million are 75 or older — which is 700% higher than the number in 1900. And according to the CDC, nearly seven million Americans live with intellectual disabilities.

The struggle to advance human rights continues, but New Yorkers can take pride in the fact that, thanks to the new law signed by our governor, their state is leading in an area that has received scant attention in the past. Hunter will continue to solicit support and ideas, not only because of the FDR connection but because it is the birthplace of the Universal Declaration of Human Rights, the United Nations document drafted on Hunter’s Bronx campus in 1946 by an international team led by Eleanor Roosevelt.

In that spirit, it’s time we fully protect individuals with developmental disabilities — and treat them as valued members of society, not as if they were less than fully human.

Glen is former surrogate court judge for New York County and the director of Supported Decision-Making New York located at Hunter College. Raab is the president of Hunter College.

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Trapping people with disabilities legally