Life was hard enough for Danielle, and in time, Consumer Directed Services would become an important part of helping her live more independently.
She had lived with autism and ADHD for years. She fought daily with chronic, intense pain caused by complex regional pain syndrome (CPRS), a rare condition that develops after an injury, surgery, heart attack or stroke, and causes extreme pain that is well out of proportion to the injury or illness that seems to have triggered it.
Then, on December 16, 2018, Danielle suffered a massive seizure, one that lasted much longer than a typical seizure. When it subsided, she was in a coma, which lasted for 20 days.
“When I regained consciousness I had no idea what had happened,” she recalls. “All I knew was that I was in a tremendous amount of pain and really couldn’t move normally at all. It just seemed like everything I had been able to do before was either gone or was extremely difficult and painful. I felt like my life was over.”
Danielle’s Recovery Journey After a Life-Changing Seizure
Danielle’s massive seizure was followed by additional, though smaller seizures. These led to a traumatic brain injury, which she’ll deal with for the rest of her life. From the start, Danielle’s doctors made it clear: if she hoped to regain even a portion of her former abilities, she would need at least a year of intensive rehabilitation. And her rehabilitation wouldn’t be limited to physical therapy. “I had to regain everything. I needed speech therapy, physical therapy, occupational therapy, and much, much more.”
Danielle’s life became an endless series of rehabilitation appointments, doctor’s visits, medications, persistent pain and slow progress. And … stress.
Funding and managing her care, getting food, bathing and virtually every facet of her life was a full-time job. Fortunately, Danielle qualified for Missouri’s Consumer Directed Services program, part of the state’s home and community-based services. It’s designed to help seniors and adults with disabilities live independently rather than in institutional settings like nursing homes.
The program allows individuals to hire their own caregivers, often people they know and trust, while the state provides the funding.
The program is funded primarily through Medicaid, which is jointly financed by the federal government and the Missouri Department of Health and Senior Services (DHSS). Missouri uses Medicaid waiver programs to offer these in-home services as a cost-effective alternative to facility-based care.
When Managing Consumer Directed Services Became Overwhelming
Danielle was grateful for the support the state provided, support she clearly needed. But, being eligible for the state’s programs and support, and actually accessing these vital resources were two different things.
“I was dealing with so many health challenges and working so hard just getting through the medical treatment, rehabilitation and doing as much as I could to take care of myself. I was always exhausted and felt overwhelmed,” she remembers. And while Danielle’s son and daughter were there to help and support her, dealing with the CDS program requirements, paperwork, documentation, transportation logistics and so much more were more than she and her adult children could handle.
How Delta Center Helped Danielle Navigate Consumer Directed Services
Everything began to change when she connected with Delta Center for Independent Living (DCIL) in St. Charles five years ago. DCIL’s team helped manage her care, guided her through hiring caregivers, and ensured they were paid through the CDS funding, all while tracking every aspect of her care, as is required by the state.
With the help and support of the DCIL team, Danielle was able to access the care she desperately needed and move on a path to living a complete life. DCIL worked to fill countless needs, inside and outside of what is handled by DCIL. “Every question I had, every obstacle I faced, DCIL was there for me. They helped me understand what help was available and how to access it,” Danielle says. “There was no way I could have managed it all on my own.”
She was also able to hire caregivers to help her at home, take her to appointments and more. DCIL helped her get a much-needed new mattress donated by a local furniture store, and loaner equipment such as wheelchairs. Her devastating condition caused her to lose a significant amount of weight, decimating her wardrobe. DCIL connected her with a local service organization that provided her with properly fitting clothing.
A Brighter Future With Consumer Directed Services and Delta Center Support
Today, Danielle has been completely seizure free for more than two years. She continues to work intensely on her rehabilitation, and the gains are steady.
Danielle holds a degree in social work from UM-St. Louis and plans to return to earn a Master’s in social work with the long-term goal of becoming an advocate for people living with and overcoming disabilities. DCIL has helped her take her first steps toward those goals, creating what she calls “an informal internship” as an
advocate. “I’ve been involved in meetings with state legislators, advocating for state support of people living with disabilities,” she says. “These legislators are understandably cautious with funding. But seeing and talking with someone who is living a life overcoming these challenges seems to make our situation more real-life. I know I’ve had an impact on them, and having the opportunity to step onto this new path has changed my life. Delta Center is making that possible.”
How Delta Center Can Help You Access Consumer Directed Services
Danielle’s story is just one example of how the right support can make independent living possible.
If you or a loved one are navigating disability, recovery, or the challenges of daily living, Delta Center can help you understand your options and access the resources available through programs like Consumer Directed Services.
Take the Next Step Toward Independence
If you’re ready to explore how Consumer Directed Services and other resources can make a difference in your life or the life of a loved one, contact Delta Center today. Our team is ready to provide personalized guidance, practical support, and the knowledge you need to take control of your independence.