Jack Lives His Best Life With CFSS
CFSS helps Jack get out into the community and helps his mom build a support network.
When Jack was diagnosed with autism spectrum disorder at three years old, his family had a hard time accepting it. Most days felt like a battle they couldn’t win.
“You just don't want to believe that people can identify disabilities that early as a parent,” said Jack’s mom Bridget. “You have so much hope and expectation watching your kid grow and expand in the world.”
Autism is primarily characterized by differences and difficulties in social interaction and communication, alongside restricted or repetitive patterns of interests, activities, and behaviors, and in many cases strong reactions to one’s senses. However, the specific presentation of autism varies widely.
“A huge worry for me, in my mind, that eventually I was able to let go of, were all the pressures of school, all the pressures of the prejudice from other families asking, ‘Why isn't he normal? Why isn't he acting normally? Why isn't he progressing normally?’” Bridget said. “Normal kind of became whatever we wanted it to be.”
Now 17 years old, Jack has trouble communicating and struggles with building and maintaining relationships. He also can become aggressive and self-destructive if he gets frustrated. At school, he spends more than 60% of his time in a special education setting and reads at a third-grade level.
“Jack has extreme deficits in social relationships,” Bridget said. “He's been struggling with speech therapy his whole life, and still manages sentences when he's prompted, but he'd like to go through the world with one-word answers to everything.”
So, as caregiving became too much to handle alone, Bridget turned to Accra for help.
“This was my first experience caring for someone with special needs, and so it took a lot of digging and investigating and researching to find the right care pathways for us,” Bridget said. “I had taken the advice of someone who had already worked with Accra, and they said that they were great. Accra is the only provider that I've used, and I'm happy with the service that we've received.”
Living His Best with CFSS
Jack has been receiving home care through Community First Services and Supports (CFSS), a new Minnesota program that recently replaced PCA Choice and the Consumer Support Grant (CSG). CFSS offers people who need home services more choice, control and flexibility with their services and supports required to live and work in their community.
“Some of the weaknesses that I support for him are in hygiene,” Bridget said. “Bathing and dressing and getting clean clothes, he's able to do these things himself. However, he's not motivated by it, so he needs verbal prompting. I provide that structure to his day with domestic discipline, such as eating healthy, exercising, and picking up after himself.”
Jack also has several PCAs who primarily take him out into the community to help him learn social skills and access recreation.
“He gets to go out into the community with someone who enjoys his company and is a good advocate for him where he can't speak for up for his needs,” Bridget said.
In the past, Jack really enjoyed jumping in the trampoline park at Urban Air or riding the go karts, which helped him learn lots of social norms. However, as he gets older, his mom is trying to guide him towards more adult recreation.
“He goes kayaking. He goes paddle boarding. He's a good swimmer. He's been in the water since he was a baby,” Bridget said. “He's also a great bowler. He was a part of a championship in the Special Olympics this year and last year as a part of his school opportunities.”
Channeling Compassion
When Bridget reflects on the positive changes she has seen and the difference that home care has made for her family, Jack’s PCAs stand out the most.
“Everybody who comes into his life teaches him something new. He had a long-time PCA for six or seven years that he learned a lot of things from. I'm so grateful for her and all the work she did with him,” Bridget said.
Having the support network of his PCAs reinforces for us that there's a greater good in the public that cares about people with disabilities."
- Bridget, Jack's Mother
Prior to teaming up with Accra, Bridget said that she received a lot of prejudice against having a son living with disabilities, which made her feel pessimistic. But now, with the help of Jack’s PCAs, she has a new outlook on life.
“I can't even describe how important it is to get relief from compassion fatigue as a caregiver and parent. If I didn't have breaks from constantly caring for Jack's needs, I would not be as compassionate and caring as a caregiver as I am,” Bridget said. “In teaming up with Accra, I've opened up my heart to the idea that more people have compassion for people with disabilities. That has helped me believe in the greater good.”