PICS Family Spotlight: Meet Annie and John
At PICS (Partners in Community Supports), we love getting to know the families we work with. Our PICS Family Spotlight series offers the opportunity to learn more about an individual or family that has chosen to partner with us for their services.
This month, we are happy to introduce Annie and her son, John! John receives services through Consumer Directed Community Supports (CDCS), and Annie is his caregiver.
PICS: Tell us a little bit about yourselves.
Annie: I am John's mother. Throughout his entire life, I have been fulfilling the role of his caregiver while also advocating for his needs. John was a happy baby but frequently fell ill with colds and ear infections. We started to get worried that he might be experiencing hearing problems and speech delays, so we consulted our family doctor. He suggested that we take John to a children's hospital when he was about two years old. The doctors there identified his speech delays and sensory issues, and he began receiving speech, language and occupational therapy. A year later, John was diagnosed with autism spectrum disorder by a pediatric neurologist who predicted that he would never talk and would have to be institutionalized by the age of 13.
John’s father and I have been strong advocates for John from the beginning. So, I started researching therapies and programs to support him with what he was experiencing. After a few months of participating in one of the in-home therapy programs, John started saying words like “juice,” “juice, please,” and “thank you.” By age five, John had said his longest sentence to date. It happened at a pony party; when I said it was time to go, he said, “No, mama, I want to ride!” After that, John started taking therapeutic horse-riding lessons along with an in-home program. His skills increased; he volunteered in the stable and learned how to care for horses. That gave him life skills for the future.
Moving forward to the present, John is a kind and observant man who enjoys helping others. He is a visual learner and has become quite independent. He is a big fan of Western movies. John loves to spend his time snow blowing, mowing lawns, and working with animals and horses. He has a dog named Rooster, whom he adores. John works at a horse rescue, This Old Horse, where he cares for retired racehorses. He works 35 hours per week and is very happy with his job.
PICS: Can you tell us about your journey with self-directed programs? How did you first learn about it, and what motivated you to choose this approach for the care and support of your loved one?
Annie: I have spent a lot of time researching the available options for John's care throughout his life. John was born in Wisconsin, and we lived in Nevada before settling in Minnesota in October 2022. When we were planning to move to Minnesota, I called various agencies to explore our options and see what was available. We have been managing John's care independently for most of his life, and that's why using Consumer Directed Community Supports felt natural to us. I must say that everyone I have interacted with at DHS, the county, and PICS has been extremely helpful. We have never had access to so many services before, and it's been a wonderful experience.
PICS: How has the flexibility and customization that self-direction offers impacted your life or the life of your loved one receiving services? Are there any specific examples or instances you'd like to share?
Annie: The flexibility and customization of Minnesota's disability services are wonderful. Besides receiving paid caregiving, we have been able to figure out transportation options for John to go to work. He uses Lyft to get there and a taxi service on the way home, and the transportation costs are written into his plan. This has allowed him to increase his work hours and given him more independence. He has goals for himself, work goals, socializing goals, and goals to live independently. Minnesota's disability services have been incredibly helpful in this regard. Having lived in other states, I can say that the waiver program feels like getting Willy Wonka's golden ticket. It has changed everything for him.
PICS: What aspects of self-direction do you find most empowering, and how has it improved your sense of control over your care, life decisions, quality of life, or independence for yourself or your loved one?
Annie: John and I find the services that he receives empowering. These services have given him the ability to live independently, which has been a great experience for both of us. Since John has become more independent, I do things that I wouldn't have felt comfortable doing before, such as traveling.
John is self-directing his care with my assistance, and he makes the decisions. He is free to make choices that align with his personal preferences. For instance, he decided that he wanted to work more, and he's doing just that. He has also decided to find a place to live on his own. That is our next adventure — looking into housing. With self-directed services, John will have access to support services like cleaning and grocery shopping, which will make his transition to independent living smoother.
PICS: How has PICS, as your FMS provider, contributed to making your self-directed experience smoother and more effective?
Annie: I think PICS is wonderful! Our service coordinator is incredibly knowledgeable and helpful. Whenever I have a question, she responds promptly and provides me with the necessary information. Compared to where I used to live, where it took months to correct any mistakes, PICS has been flawless. I have had no issues with their service, and everything is always handled.
PICS: As someone using self-directed services, what advice would you give to others who may be considering this support option for themselves or their loved ones?
Annie: It’s difficult because you go through tests and assessments and get a diagnosis, and then you are unsure what to do. Many parents and caregivers get overwhelmed and don’t do anything because they don’t know what’s out there for them, who to go to, or how to get started. I would encourage them to start early and be the advocate for their loved ones. Contact your local county human service agency or tribe to determine what services your loved one may qualify for. Educate yourself. You must grasp what’s needed and how to pay for the services your loved one needs.
PICS: That’s great advice, Annie. The first step for someone interested in determining eligibility for Home and Community-Based Services (HCBS) is to call your local county human service agency or tribe and ask for a MnCHOICES Assessment. The agency can provide you with information about the available programs, eligibility requirements, and how to apply. The MnCHOICES assessment is a free, in-person assessment that will determine your needs and identify what programs, services, and supports you may be eligible for. The assessor will ask you questions about your daily living activities, where you want to live, how you want to participate in the community, your medical history, and any other needs you have.
We have created a step-by-step checklist to help families start with HCBS services.