Note: This post was written just prior to Jenny’s victory in court last Friday.
Margaret Jean Hatch (Jenny) should be able to make her own decisions instead of being placed under guardianship and having her basic rights trampled.
Jenny is a twenty nine year old Virginian with Down Syndrome. Her story was chronicled here and this case has pitted her parents against her. The parents have asked the courts to intervene, declare Jenny incompetent and have requested full guardianship. They want to decide where Jenny lives and who she has as friends. In this case, it means they want Jenny to live in a group home with other persons with disabilities (and an agency chooses who her housemates are) and they want to decide who she sees. They want to strip her of her freedom to make choices and the ability to make her own decisions. Jenny is adamant about moving in with friends instead of living in a group home. This battle is being fought by lawyers in a Virginia courtroom instead of being led by Jenny in the home of her choosing.
The idea that individuals with intellectual disabilities should and can make their own decisions is not new. It is called self-determination. We have moved from the formally held belief that families and professionals should make decisions on behalf of persons with disabilities to the new paradigm that people with disabilities can and should make their own decisions. We believe that everyone can make their own decisions, including people with significant disabilities. Like the rest of us, they might require assistance from family, friends or professionals when confronted with a complicated decision. Everyday remedies are already in place to deal with complex issues and difficult decisions. There’s overwhelming research that people with disabilities, especially those with Down syndrome, can live on their own or with minimal assistance and make their own decisions.
The laws of guardianship vary from to state. Many states allow for limited guardianship and even temporary guardianship. These features ensure that the specific needs of an individual are addressed, rather than taking all decision making capabilities away as in a full guardianship. For example, the Social Security Administration often requires a representative to receive, dispense and report on Social Security payments, often the primary financial resource of a person with a disability. In most hospitals, a health care proxy is required upon admission so that a trusted person is available to make decisions instantly.
We oppose guardianship in all but the most extraordinary of situations, and clearly Jenny does not in any way meet the level where full guardianship is required. There are other, less intrusive ways of providing support and assistance to individuals with disabilities.
In Massachusetts, a person with a significant disability does not have to be deemed “incompetent” in a guardianship proceeding to have access to assistance. An individual, like any of us, can designate a Power of Attorney and a Health Care Proxy. Massachusetts regulations allow for a person to be authorized to be an advocate. None of these require the involvement of the court and have no cost to establish.
We trust people to help us make choices all the time- why shouldn’t Jenny be given the same latitude?
Jenny has a steady job, rides her bike around town, is described in court documents as having “good survival skills.” Her father lives out of state and her mother does not want Jenny to live with her. A group home may seem safer and provide them peace of mind but that’s not what Jenny wants. She wants to live in a smaller setting, with two individuals who want to share their home and friendship. They are also able to provide Jenny with the oversight and assistance she needs. It is not that group homes are bad places to live. We have learned that smaller settings are better, as they permit a natural inclusion into community life. We believe that a person with a disability ought to control all the aspects of their life- who they live with, when they eat and bathe, what leisure activities to enjoy and what time to retire at night. These small but significant decisions are usually not honored in a group home where the needs of the group outweigh the individual needs of one person.
There’s a fundamental shift underway in our country and it has already impacted the way states are providing residential services. The number of baby boomers, the growing population of people with disabilities (20% of the population, according to the US government), a shortage of care givers and Medicaid reform has shifted funding away from group homes towards supporting family care.
Despite all the advancements people with disabilities have made and the protections afforded them under the ADA, the way that guardianship is allowed to flourish in our country demands our attention. There are still too many professionals and some families who believe that every person with an intellectual disability should have a guardian, in spite of evidence that demonstrates that it is not necessary. People have a right to make bad decisions- people smoke, eat foods that are harmful, bike without a helmet and yet we do not appoint a guardian for them. People with disabilities are entitled to make their own decisions even when others think those decisions may be wrong.
We can’t judge whether Jenny or her parents are right about the best residential environment for her but we do know that Jenny should have the right to decide. The appointment of a guardian is not the proper way to make a determination in this case. The decision is Jenny’s and Jenny’s alone and if she makes the wrong decision, she will not have been the first to make a bad choice about roommates.
And she won’t be the last.
Jay Ruderman is the President of the Ruderman Family Foundation. Jo Ann Simons is a Disability Advisor to the Ruderman Family Foundation and President and CEO of the Cardinal Cushing Centers
Jenny won her case last week in court. Learn more about Justice for Jenny
Read our last post: Sibling Journey
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