Suzanne Heck wanted her rights back… and in the process the 22-year-old from Lexington became a pioneer and role model for those like her in Kentucky.
Shortly after Heck, who is diagnosed with a mild intellectual disability, reached adulthood, a Kentucky court took away her right to decide where she lived, what she did with her money and what happened to her body.
At the age of 18, she became a ward of the state.
So in March of 2017, Heck (her friends call her Suzie) and her support team contacted Kentucky Protection & Advocacy and requested its help with restoring her rights through Supported Decision-Making.
SDM is a way people can make their own decisions and stay in charge of their lives while receiving any help they need to do so. Supported Decision-Making is just a fancy way of describing how we all make choices.
Currently in Kentucky, there are over 4,500 adults in the state guardianship system, which is underfunded and severely overburdened.
Many adults like Heck can make decisions for themselves with the support of a team. Heck’s team consists of friends and paid caregivers through Kentucky’s intellectual and developmental disability Medicaid waiver called Supports for Community Living.
She attends day services at an Adult Day Training facility in Lexington, lives in a home with two housemates and staff who assist her with daily living, as needed.
When Camille Collins, an Advocate with Kentucky Protection & Advocacy, became involved in Heck’s case, Suzie’s supporters had already begun functioning as a SDM team.
Team member Stacy Seale, a licensed psychological associate at Employment Solutions, submitted a psychological report with a petition to modify or terminate guardianship in Fayette County District Court.
In this report, Seale emphasized all of Heck’s abilities and that she works with her team when making medical, personal and financial decisions.
“Ms. Heck does a wonderful job of seeking out her team and asking for their input on her current life decisions,” Seale said.
Seale concluded that Heck, working with her SDM team, would no longer need a legal guardian.
In April, Heck attended a hearing to modify or terminate her guardianship order. Her state guardian attended and agreed with Heck’s request.
Because the county attorney was not comfortable with the restoration, Collins requested that an attorney be appointed for Heck and that the hearing be postponed. The judge agreed.
Moria Mulligan, Heck’s appointed attorney, worked with Collins and Heck’s SDM team to learn how individuals with disabilities can use teams to support them in their ability to make decisions for themselves.
Heck also created a “Dream Board,” which consists of photos of her SDM team members on one side and illustrations that represent her hopes and dreams on the other.
Her goals are no different from anyone else’s – vacations, employment, and more time with family and friends.
As a ward of the state, most if not all of her goals and dreams would have to be approved by a guardian, forcing Heck to defend her goals.
That would mean meetings and hours of discussion. That was one of her motives for terminating guardianship.
On July 24, 2017 – two days before her birthday – the judge, with the agreement of the county attorney who better understood Heck’s situation, fully restored Heck’s rights. She is now able to make personal, medical and financial decisions.
Heck is a sort of Jackie Robinson for restored rights. She is the first person on record in Kentucky to have her rights fully restored by the courts with Supported Decision-Making as an alternative to guardianship.
Heck was so elated when the judge ruled in her favor, she nearly floated out of the courtroom.
“I was really nervous at first but when the judge ruled, I almost ran out because I was so excited. I was blown away,” she said.
Heck admits that the full impact of the ruling has yet to sink in, but she already has benefitted. Recently, she went with a friend and her friend’s caregiver to the Hamburg YMCA.
“As far as I can remember, that’s the first time I went out without a caregiver,” Heck said.
What else will she do with her freedom? “I want to buy a copy of the movie, ‘The Last Mimzy,’” she said.
Sounds simple enough. Not so if she were still a ward of the state. A request for cash would go though her guardian and then on to the state and could take a few weeks to process.
“Now, if she wants $50 to go to Kentucky Kingdom, for example, she can get the money the same day. She has total control of her money now,” Collins said.
“I’m excited for her. Research shows that people who are empowered with their rights live happier and healthier lives.”
Heck is bursting with plans for the future. In 2018, a visit Dollywood, and Disney World a year later.
She wants to be a social worker or a police officer or go to college. “How do I start applying for jobs?” she asks.
Chastity Ross, a former chairperson of the CCDD Council, is her case worker and can help with job searches or refer her to the Office of Vocational Rehabilitation.
In the meantime, Heck is heady with all the wild possibilities. “It’s awesome that I could go wherever I want and live wherever I want.”
Actually, her wishes are much more grounded – She longs for a family setting through the Family Home Provider program.
“I want to live with a family but why is it taking so long?”
Not to worry, said Collins. “I think you will find a family provider soon because you’re such an awesome person,” Collins said.
A big grin creases Heck’s face. There is much to be happy about now for Suzie Heck, a free woman with big dreams for the future.
The National Resource Center for Supported Decision-Making can help you find information on Supported Decision-Making and other alternatives to guardianship, access Supported Decision-Making agreements and other legal forms, connect you with people and organizations that may be able to help you, and answer your questions. Info: www. SupportedDecisionMaking.Org.