I cannot imagine what it would be like to have absolutely no one in this world that is connected to me. But there are people in this situation. And among them, people who not only have no one, but who have intellectual disabilities and are not able to make decisions about their own well-being. They are the most vulnerable individuals in our communities.
Anne* is such a person.
Anne is a 36-year-old woman who is intellectually disabled. She lives in a group home and goes daily to a sheltered workshop (facility that employs people with disabilities). She has friends, also intellectually disabled, in the home and in the workshop.
Anne was told she had terminal cancer. Given Anne’s limited intellectual ability she could not understand the implications of this diagnosis and because she had no family or guardian, there was no one to represent her interests. The group home was not Anne’s legal advocate, so no one there could make medical decisions for her. Anne deserved compassionate care in her best interests.
JF&CS’s guardianship department was contacted by an individual not associated with the group home who was also involved in Anne’s care. Our guardianship staff investigated the situation and then went to court to petition for guardianship of Anne, which was granted. JF&CS could then take Anne for a second opinion, which was that Anne’s cancer was still in an early enough stage to treat. A third opinion was sought, which confirmed the second. Anne received treatment and is now in total remission. If JF&CS had not stepped in and been appointed by the Court to serve as Anne’s legal guardian, she wouldn’t be here today. She would have died a painful and unnecessary death.
Anne’s parents had set up a special needs trust with the group home provider for Anne. Special needs trusts are made specifically for the benefit of the mentally or physically disabled and last until the funds are depleted or until the beneficiary’s death at which time the remaining funds revert to the trustee…in Anne’s case the group home which was supposed to use the funds for the benefit of Anne while she was in their care (our guardianship staff actually discovered the existence of this trust on their own during their investigation).
But Anne’s parents had died without petitioning for a guardian for Anne. With the group home potentially benefiting from the special needs trust upon Anne’s death there was a clear conflict of interest. On the other hand, a guardian has no interest other than the welfare of the client to consider.
Before you read this, some of you may not have heard of the term “guardianship” or have been fully aware of what it is. It’s one of our less visible services, but nonetheless is central to our mission to look out for the vulnerable.
Under the leadership of Guardianship Director Nicole Iole, JF&CS currently serves as legal guardian for more than 100 individuals (wards) deemed by the courts incompetent to make decisions regarding their health and welfare. They may have Alzheimer’s disease and other dementias, chronic mental illness, brain injury or developmental disability. But they all have one thing in common: they need protection. They need someone who is legally responsible for decisions regarding their health and welfare and for the prudent use and protection of their assets. That is what JF&CS, as guardian, provides.
Our guardianship services include both private and government-funded guardianship and conservatorships (where we might work in partnership with the conservators who manage a client’s assets while we serve as guardian, managing the medical and personal care of the ward). And guardianship staff often works in conjunction with other JF&CS services, such as care management or special/critical needs.
We make decisions on behalf of our wards based on substituted judgment, meaning we make decisions based on what we believe our ward would decide if he/she had no impairment. And we value the input of involved family members, if these relationships exist.
Referrals come to us from many sources. Private pay referrals may be made by family members unable to serve as guardians themselves or from aging parents of an adult special needs child, by attorneys, hospitals, personal care/residential providers or agencies.
The JF&CS guardianship program follows all standards set forth by the National Guardianship Association and we are subject to the rigorous documentation and reporting requirements of the state and orphans court. We have one simple goal: to ensure the safety, dignity and well-being of those entrusted to our care.
For more information, please call us at 412.422.7200 or visit our website for more information.