Tuesday, February 20, 2018

Family fund is a lifeline, but demand outstrips supply

By Louise Kinross

Anyone who knows Geoffrey Feldman knows that he's an extraordinary parent.

“I'm not a typical dad,
” he says with a chuckle.

At 76, Geoffrey's raising his 16-year-old daughter Isabelle, who has a rare genetic condition, on his own. 

“Having a special-needs child is extremely expensive,” he says. “If I wasn't working on a contract right now, I'd be finding it hard to make ends meet.”

Since 2011, Geoffrey and Isabelle have benefited from Holland Bloorview's family support fund, which covers items and services that promote child and family wellbeing. 

The donor-supported fund, which has a budget of $250,000 a year, recognizes the extraordinary costs associated with raising a child with a disability.

For Isabelle, it's meant swimming lessons, dance and art classes and being a camper in Spiral Garden, our summer arts program in the ravine behind the hospital.

“Isabelle will need supervision for the rest of her life, so I'm trying to give her these activities that will help her learn to better fend for herself,” Geoffrey says. “These programs
 have given her an amazing amount of confidence. She now has a group of friends that have become her social peer group.”

According to Adva Budin, who administers the family support fund, “equipment, recreation and respite are the most utilized categories. It may be addressing a child’s complex needs with equipment, providing recreational programs to benefit a child’s development, or helping with the cost of respite at home.”

For example, families can apply for a maximum of $1,500 towards equipment like wheelchairs, walkers, commodes and helmets. They can also apply for up to $500 for prescribed medication that isn’t covered by insurance or OHIP +.

A maximum of
 $1,000 is available toward equipment that supports quality of life, such as communication devices and writing and hearing aids. Another $500 can be dedicated to summer camps and swimming, art, music and sports programs.

And parents can get support for their own ”day-to-day coping,” Adva says. Parents can apply for up to $500 to support a respite worker at home or at camp, or a child’s stay at a respite facility.

Another $250 is available to cover TTC passes for families who are not able to access Wheel-Trans.

The fund received 710 applications in the first nine months of this fiscal year, depleting it to the point that new a
pplications are on hold until April 1. 

Holland Bloorview's foundation hopes to raise significantly more dollars to grow the annual fund next year.

“The need is increasing,” Adva says, “especially with President’s Choice Children’s Charity ending its program to support children with disabilities.”

Applications are manually processed by Adva and scored by a group of volunteers. Families need to include a letter of support from a health professional.

Families consistently express gratitude for the program, Adva says. “I frequently hear from families who are purchasing extremely expensive things, like a modified van, and they say every bit of funding they can get is critical. I also hear a lot from families who are fatigued and burned out emotionally, and they need respite. Some people are just so grateful they can put their kids in a swimming program and see them happy and smiling. So it’s the little things, too.

To donate to the program, please click here or call 416-424-3809. Applications for the fund will be available online on April 1.