A roughly two-and-a-half-hour drive north from the hustle and bustle of the Twin Cities along Interstate 35 brings you to the city of Duluth. The city is synonymous with summer vacations in Minnesota, promising cooler temperatures for folks looking to escape the summer heat downstate. Nestled between Lake Superior and the pine forests and stunning cliffs of the North Shore – it’s no wonder that many of the city’s residents, like Alicia, take advantage of the easy access to outdoor recreation through all four seasons.
Swimming, kayaking, and skiing are just a few of the activities that fit into Alicia’s schedule in this outdoor paradise. Where many might wince at the thought of swimming in the cold waters of Lake Superior, Alicia embraces it: “I like to be in the water. It feels good to me!” she says. Being involved in various activities year-round brings a lot of joy to Alicia, but these opportunities weren’t always accessible to her.
Alicia started partnering with Lifeworks for Self-Directed Services in late 2023. Before learning about Lifeworks, Alicia lived in a group home with several others. “I raised [Alicia] until she was 19. She lived in group homes after she was 19 – some good experiences and some challenging experiences,” says Amy, Alicia’s mother and Support Manager.
After leaving a group home that wasn’t a good fit, Alicia moved back in with Amy and her husband, Steven. Amy was unsure what would come next for her daughter, so she spoke to her case manager. “I just said I really wish that she could live independently in her own apartment.” To Amy’s surprise, the case manager told her that it was possible for Alicia to live on her own and referred them to Lifeworks to learn more about how Self-Directed Services could help Alicia achieve this.
“[Our case manager] got me hooked up with Jolene with Lifeworks. Jolene came and did an interview intake. I was just blown away by her answers,” says Amy. One of the things that Jolene confirmed is that Alicia could live independently. Things progressed quickly for Alicia – with her moving into a new apartment earlier this year.
Not knowing that independent living was even an option was the most significant barrier that Alicia’s family needed to overcome. Amy doesn’t feel that she was ever misled about group homes being the only option for Alicia. Still, she says, “I felt that until I started asking questions that I didn’t know were there to ask, I didn’t know the resources that were available.”
I felt that until I started asking questions that I didn’t know were there to ask, I didn’t know the resources that were available. -Amy, Alicia’s mother
Lifeworks helped address the primary challenges that Alicia faced in a group home setting: lack of personalized attention, staffing shortages, and accessing the community. As Alicia’s Support Manager, Amy is now able to hire staff that support Alicia in exploring her interests, getting out and about, and living independently. In the group home setting, Alicia’s autonomy wasn’t always prioritized. She can now say what she wants to do, and her staff support her in doing so.
Living in her own apartment has made a huge difference in Alicia’s well-being. “It was kind of nice for me to be on my own,” she says. “I like to have my mom come visit me at my apartment. I like to do some cleaning stuff for my room. I do chores and busy stuff,” she adds. Outside of her apartment, Alicia’s staff helps her stay busy with various activities around town: “Kayaking, sailing, biking, bowling, movies, and shopping. I feel like sometimes I have to tell her staff I think she needs some downtime!” Amy jokes.
It was kind of nice for me to be on my own. -Alicia
Managing support staff and caring for Alicia is nearly a full-time job for Amy. Being a Support Manager can be overwhelming, but Amy feels relieved that she can rely on Lifeworks to assist her. “Jolene has been my contact person, and she has just been super. Rarely do I end up having to wait long for a response from her,” says Amy. “I’ve been very, very pleased with Lifeworks. I wish more parents and guardians knew about Lifeworks because it’s been a game changer for our family.”
For many families, it can be challenging to find non-medical resources once a child with a disability leaves school and transitions to the next phase of life. Amy has experienced this: “From a very young age, she was integrated into the special education classes at school. She had occupational therapy and speech therapy. So, we were connected in the medical part of it, but they didn’t know where to direct me to get resources.”
Many of these resources are recreational opportunities for Alicia, like through Northland Adaptive Recreation, where she takes part in skiing and sailing classes, or assistive technology like Amazon Alexa or an accessible cooktop for her stove, made available through the Lighthouse Center for Vital Living in Duluth.
In such a short time, the resources and services available to Alicia have significantly expanded. “I feel like once you’re in, it’s amazing how many resources there are in Duluth and throughout Minnesota,” says Amy. “But it’s not always easy to get that information unless you’re connected. Now that we’re connected, it’s like information overload!”
After connecting with Lifeworks, Amy now has greater peace of mind as Alicia’s mother. Amy now feels empowered to ensure that Alicia can live the life she wants to live. “Now that I get to hire and train [staff], and really say this is what goes and how you treat my daughter – it’s been a miracle,” says Amy. “The difference Lifeworks made to her life and my life – I want other parents to have that.”
The difference Lifeworks made to her life and my life – I want other parents to have that. -Amy, Alicia’s mother
With Alicia settling into her new apartment and getting more involved in her community, she is now looking ahead to what’s next. She hopes to continue increasing her independence and is considering finding a part-time job that suits her interests. After so many positive changes in her life, Alicia says “I’m happy for it. I’m really proud I’m here.”
I’m really proud I’m here. -Alicia