'Courage and tenacity': Naples mom is activist, change agent for disabled, caregivers
Stephanie Nordin says she knew nothing about autism until her twin sons were born 14 years ago. She knew little about the politics of making life easier for families of children with special needs, until her son nearly died.
But Nordin overcame each challenge, fighting not only for her children, but for everyone struggling to raise youngsters that need extra care.
The 39-year-old Naples mom became the powerhouse behind a state bill that was recently signed into law that gives families easier access to services. She is a leader in the quest for summer camp programs in Collier County; which give parents a way to work when the kids are out of school. And she is the founder of Autism Collier which is dedicated to helping families connect with resources, each other and to provide a network of assistance.
In the beginning, Nordin felt alone
Logan and Gavin were just six months old when Nordin’s friend noticed some traits of autism and suggested the new mother have them evaluated. At first the pediatrician dismissed the idea, but Nordin fought to have more tests. Her boys were diagnosed as having autism when they were a year old.
“The passion to protect the boys really began there,” Nordin said. “As I tried to do the standard mommy things like playgrounds and mommy groups, the community around me wasn’t accepting of my boys. It almost became a part of what I had to do. I went through everything from anger with outsiders, to isolation.”
Nordin felt alone. Holidays with family were difficult. Simple childhood things like trick-or-treating or an Easter egg hunt were a major challenge. People didn’t understand why her sons wore helmets, but it was to protect them when they banged their heads on the floor. They didn’t understand why they didn’t always speak or covered their ears.
So she began educating herself, and then turned her attention on her friends, family and the community at-large.
“I had a dream childhood and I had a vision of what that looked like,” said Nordin, who grew up in Collier County.
When the twins started school, she had to learn about the individualized education program or IEP process and all the procedures that it entailed.
“I found myself frustrated,” she admitted. “It was really difficult for me to comprehend. I wanted someone to understand my boys.”
Slowly, she began finding some resources. She met other parents that had children with autism and she found a small private school that helped her sons flourish.
‘We were in crisis’: Tragedy changes everything
Everything changed on the afternoon of Feb. 7, 2022, when Logan ran through a second-story window at his school and fell 20 feet to the ground, fracturing his skull, back, arms, legs and ribs. He was flown to All Children’s Hospital in St. Petersburg. Doctors didn’t think he'd survive.
“We were in crisis,” Nordin described.
She had to stay with her son in the hospital, but she also had to find someone to care for Logan’s twin brother Gavin and take care of Nordin’s two younger sons, Eli and Titus.
“It took us over a year to get support,” she recalled.
That 385-day wait to get assistance from the Agency for Persons with Disabilities prompted Nordin to contact local lawmakers to fight for a change that would help families in similar situations.
The law
Before 1993, people with severe mental disabilities would typically be placed in asylums or institutions. There were few if any alternatives. It was Jeb Bush who made the Agency for Persons with Disabilities its own entity to serve the needs of Floridians with developmental disabilities and provided families that care in their homes or communities. People with severe disabilities could now get respite care, personal care, and help with bathing, feeding, dressing and going to the park. There were services like job coaching, speech and occupational therapy. The problem was there was so much need and not enough money or personnel to support it. There are currently 35,000 people enrolled in the program, but another 22,000 on a waiting list. About 40 percent of those people spend more than 10 years waiting for the services.
“They do it by priority. When you are in crisis you are supposed to get services right away,” Nordin explained. “We were home within 45 days and Logan was healing and I was at home now with four kids and things were wild. My boys were not getting any help and I was drowning. I had two choices. I could have fear or I could let go and do something.”
Nordin chose to do something. She started meeting with local politicians, she went to legislative delegation meetings and she began researching the community-based waiver process (aka Med Waiver).
“I have a notebook this thick with the agency trying to get these services started," Nordin said as she stretched her arms two-feet wide. “Usually I was met with a very cold distant ‘good luck’. From the very first phone call I knew that this organization is fragile and this is not going to be an easy ride.”
But Nordin persisted. She studied the law and what changes she believed were necessary. She began navigating the bureaucratic maze that families with disabilities often face. She launched a Facebook group and held weekly Zoom meetings to help organize her effort. Nordin went to Tallahassee in March 2023 to lobby lawmakers. In August 2023 she gathered other families that were struggling with their children with special needs, and they fought together.
“There needs to be more than one voice to make it change,” she stressed. “I met with 10 families and then it grew to 200. It was the most incredibly empowering thing to see a family go from desperate and in despair to ‘this is where we can go’ and then see the response from legislators helping. What we did that was different is we personalized it. The families did a personalized story of where they were, the positives and the struggles. We compiled all the stories and brought it to the legislators.”
Nordin believes that having legislators see the actual families struggling and hear their stories helped get the legislation passed.
The bill (SB 1758) focuses on several things to make life easier for people with special needs and their caregivers.
It improves the waitlist time for the medical waivers and at-home services.
It allows caregivers that are 60 years old to get off the wait list. Previously they had to wait until age 70 to qualify.
It makes application available online.
It creates additional funds for disability related care and services.
It accelerates the crisis eligibility determination timeline from 45 days to 15 days.
The bill allocates $39 million in funding to support the healthcare system in the disability sector.
The bill goes into effect July 1. Nordin believes everyone should get enrolled during the first fiscal year, but the Agency for Persons with Disabilities said it will take about three years to get services fully running.
State Senator Kathleen Passidomo has also been a huge supporter of Nordin’s efforts to get the bill passed.
“Stephanie Nordin is a hero to me and to so many others across our state,” Passidomo explained.
“Her courage and tenacity have inspired and uplifted me on so many occasions. She is making a difference in the lives of people living with disabilities as well as their family members and caregivers. Everyone deserves a chance to live healthy, and for our fellow Floridians with disabilities that means living independently, at home in our communities, for as long as they possibility can. Caregivers, particularly family members of those with disabilities, are truly amazing people who sacrifice so much. As a caregiver ages, it can be more difficult for our neighbors with disabilities to receive care at home, accelerating the need for additional services. The last thing we want is for loving families to be separated. This bill prioritizes home-based care options and associated funding for those with an aging caregiver, so both the caregiver and the person with a disability can live a happy, safe, and healthy life in their own home.”
It's not over
Nordin’s quest to make life better for people with special needs and their families continues. Personally, she is still fighting to get more services for her sons. Right now, she gets a personal care assistant, paid for by the state, for 15 hours a week for Logan and no assistance for Gavin. That makes it hard for her to spend time with her two younger sons Eli, 13, and Titus, 11. It makes it impossible for her to sleep much at night since her boys constantly wake up and need care.
“My boys sleep 2-3 hours a night,” she described. “I have been on a newborn sleep schedule for 14 years.”
Her sons need constant supervision.
“Sometimes (one of the twins) will wake his little brothers or throw iPads down the stairs,” she described. “The potential for incidents is so huge and we are not the exception. This is so rampant among families with children with autism.”
During school holidays, she rarely gets a break until the weekends when her boys go to their father’s house. Nordin said she should qualify for 35 hours a week for each twin and is fighting to get that service.
Nordin is also taking her quests beyond her family. She is an advocate for early intervention and wants more services for young children with autism.
“Early intervention is so key,” she stressed. “If we can get those interventions at the age of three, the future outcome would be unbelievably better. Many families wait six or seven years to get those services. That is where I want to go next; to build something for our 3-year-olds to have some services so that they have a long-term chance of better opportunities.”
Nordin is also working toward getting the various organizations that help people with special needs to better coordinate their services.
“I want the coordinating agencies to all coordinate together so services are actually happening and we don’t get outrageous denials,” she said.
One of her biggest current challenges is summer programs. River Park had been the summer camp savior for families with special needs for many years. But last year, the City of Naples changed the rules requiring each camper to come with their own assistant. Most families could not afford that. Last summer and this summer, the Naples Children and Education Foundation (NCEF) provided funds through the nonprofit STARability Foundation to pay for the assistants, but says this will be the last year for that money. So, Nordin is working with the city and parks and recreation to find another solution.
“We need to get together with the county and city and get long-term solutions,” she said.
Collier County Commissioner Burt Saunders has been a big supporter of Nordin’s efforts and is now busy helping her get more parks and recreation services for people with special needs. He praises all the work Nordin has done both in Collier County and statewide.
“She does a great job in advocating for more services for people with disabilities and in particular people that have autism,” Saunders said. “She is quite an effective advocate. We have more and more children being diagnosed with autism, and it's just a fact that these children need help. She does a great job, and she speaks from personal experience, so that makes her more real to her audience.”
Help is here
When Logan and Gavin were diagnosed with autism, Nordin said she felt isolated. She had trouble finding the services she and her children needed. That’s why in October 2022 she founded Autism Collier. The nonprofit is dedicated to helping families with autism connect with resources and with each other. The group provides education about autism and serves as a support network.
“One of the things that irked me so much was all the things I had to do to find a resource or find a play group,” she described. “I would make a phone call and they would call back in three days to say they were full. So, I started a database and grew that to support other families and have fun activities and educate on these resources that are hard to understand.”
One in 36 children has autism, according to the Centers for Disease Control. Nordin said with more than 60,000 children living in Collier County, that is more than 1,900 that have been diagnosed.
She hopes Autism Collier will help families and also provide the manpower to make changes.
“Now other parents are empowered. That is the good kind of contagious,” Nordin said. “What the other kids are doing, they should be doing. They should have equal access. I don’t want different. I don’t want special. I just want the same. All this advocacy work is important to me because it really matters, and that is the role we are supposed to play.”
Family life
On a recent evening Eli and Titus were helping their mother peel potatoes and chop broccoli for dinner. It was one of the rare moments of normalcy for the family.
“She is nice and forgiving,” Titus said about his mom. “We watch movies together. Sometimes we play board games.”
Nordin tries to give some sense of a typical childhood to her younger children. She takes Titus to Cub Scouts and makes sure Eli gets to Boy Scouts each week. They went to SeaWorld for a Boy Scouts trip. They have been to the Christmas tree lighting on Third Street South in Naples. Last summer, they took an RV trip to Michigan.
“We like to do outdoor things together,” she said. “I had four boys in three years so this is my total normal. They are incredible boys. But they missed out on so many things. They don’t have a normal childhood either.”
When Logan’s assistant is there, everybody except Gavin can sit down together for dinner. Nordin hopes that once Gavin gets an assistant, he can join them.
“That would be amazing,” she said. “It would be everything I ever dreamed of.”
She hopes other parents of children with special needs have dreams that can come true too.
“For Mother’s Day I really would love for other moms to know they are not alone,” Nordin said. “It is hard for special needs moms to think of Mother’s Day as a joyous day. Every day is hard. I just want to give them some hope.”
More about Stephanie Nordin
Age: 39
Hometown: Born and raised on Marco Island, currently lives in Naples.
Recent accomplishments: Advocate for people with special needs. Powerhouse behind bill (SB 1758) getting passed that helps people with special needs get better and faster services. Founder of Autism Collier
Occupation: Realtor for The Henderson Team at Keller Williams
Education: Bachelors of science in mass communications and business from Southeastern University
This article originally appeared on Naples Daily News: Florida mom force behind law aiding those with special needs, families
