Long wait list for summer autism program 'heartbreaking' for families

For the last 3 decades, families of autistic children and teens have relied on the Bruce Awad Summer Program for respite and structure. The wait times continues to grow but funding does not. And for some families, that creates stress on the family dynamic.

The Bruce Awad Summer Program is expected to be packed again this year

Amari Rubio, right, and his mother Claudia play at their home. Claudia worries her son won't be able to participate in the Bruce Awad Summer Program for kids with autism because of the long wait list. (Armand Bumanlag)

Claudia Rubio has spent the past two years worrying and waiting to find out if her son Amari will be able to attend a special summer program for children with autism.

The seven-year-old is just one of thousands in Windsor-Essex on the autism spectrum. For the past two years he, along with dozens of other kids, have been on a wait list for the Bruce Awad Summer Program.

With just months until the 2018 edition of the program kicks off, staff and board members have begun sifting through applications, meaning Rubio still doesn't know what this summer will hold for her child.

'I'm just taking it day by day," she said. "Waiting to hear."

Rubio said without structure this summer her son may suffer. (Armand Bumanlag/CBC)

The program was created by a retired teacher, who founded it based on necessity — Awad's daughter has autism and he noticed a lack of services for kids in the same situation during the summer months.

It's difficult, it's heartbreaking sometimes to know that families are waiting and are being turned away.- Bruce Awad

Fundraising, lobbying the government for support and developing the program, all while raising his daughter created some stress over the years for Awad and his family.

"There was a lot of sacrifice for our family," he explained. "My wife gave up her career to take care of our daughter, and the kids? They get sacrificed too. It puts a lot of strain on any family."

Bruce has since retired from the board, but he still advocates for both provincial and federal funding for the program itself, in addition to fundraising they do through the year.

Bruce Awad talks about the long wait list for a summer program for kids with autism 0:31

But all of that work still isn't enough to meet the needs of families waiting to get into the program and the wait list has outstripped the number of available spots for years, something Awad described as "unacceptable."

"It's difficult, it's heartbreaking sometimes to know that families are waiting and are being turned away." he added.

Families waiting to access the program are asked to submit their needs as part of their application package and whether or not each child is able to participate is based on admissions criteria considered on a case-by-case basis.

Children are able to attend between the ages of six and 21 — depending on their level of need, they may utilize the program for their entire 15 years of eligibility.

Program a blessing for families

A high staff-to-student ratio is necessary to make the program successful, but is also very costly. Over the past 10 years, there's been a minimum of 12 children on the wait list, with some children staying on that same list for 3-4 years.

Families who do get into the program say it's a blessing.

Kevin Locking has twins, Matthew and Abby. Abby was diagnosed with Autism Spectrum Disorder, something the family has struggled with.

Having that respite in the summer helped saved my family.- Kevin Locking

The constant supervision and sacrifice needed to care for a child with autism takes a toll on caregivers, so Locking is grateful for the respite the summer program provides Abby.

"Maybe someway, somewhere, someone can make this program bigger so more families can use it and benefit from it," he said.

The Locking family were on the list for several years before an injury put their family at the top of it and Abby was able to get in.

Kevin Locking has a daughter with autism and said he hopes the program will be able to accept more children in the future. (Arms Bumanlag/CBC)

She's attended the program ever since, and Locking said he's noticed gains in her learning and development. 

"I tell people waiting to hang on. Hang on and keep asking for updates," he said. "Having that respite in the summer helped saved my family and gave Abby the structure she needs."

For the past two summers, Amari has been in therapy, which provided some structure, but now his therapy is over and Rubio worries what the warmer months will bring.

"We had to adapt a lot, to his needs and how he learns due to his autism," she explained. "It's a constant struggle to meet his needs and make sure he is structured."

A definite wait list will for the upcoming summer will be released in the spring, but the board expects the program to be full again.

Still, Rubio and Amari have a reason to hope — five people are expected to turn 21 this year and age-out, meaning there's a chance this summer he'll finally have a chance to leave the wait list.

About the Author

Armand 'Arms' Bumanlag

CBC Windsor News at 6pm TV Host

Armand 'Arms' Bumanlag has been in the Windsor Detroit media scene for over 15 years. From hosting his own talk radio show to reporting from breaking news and weather on television. Arms has covered it all in Windsor. He's married, and is expecting his 1st son.