Posters of the “Hunger Games” movie adorn the walls of Amber Geary’s bedroom in Depew. Figurines of the pop boy band “One Direction” sit on a shelf.
The room in many ways looks like that of any teenage girl.
But there are unusual amenities, too: an adjustable bed, an oversized doorway and metal tracks on the ceiling that run across the bedroom, down a hallway and into the bathroom.
The features help make this 600-square-foot addition to the Geary home handicapped accessible for Amber and her twin sister, Ashley, both of whom were born with cerebral palsy.
“We call it the twin wing,” said Debra Geary, mother of the 15-year-old girls. “This addition is a world of difference. It’s just a relief on our whole lives.”
It took 20 months and lots of wrangling with state bureaucracy, but Debra and Timothy Geary finally have a home where they can properly care for Amber and Ashley.
This week, they put the finishing touches on a concrete ramp at the front of their house, a last piece in efforts that began in 2011.
“It’s nice to see the light at the end of the tunnel. It’s been a year and eight months of building,” Timothy Geary said.
The process has been anything but easy.
The Gearys knew they had to make changes to their two-story house about two years ago. Ashley, who has severe disabilities, was growing too big to be safely carried up and down stairs.
All of the bedrooms and bathrooms in the house at the time were located on the second floor.
The Gearys were intent on keeping their daughters at home, instead of having them placed in an institutional setting. They decided to build an addition with two bedrooms and a bathroom for the girls on the first floor.
They used their savings – about $25,000 – plus cash donations and donated work and materials from area contractors to build the foundation, framing, walls, heating, electrical and rough plumbing.
They then relied on a New York State “environmental modifications” program that pays for renovations to help people with developmental disabilities stay in their homes.
The program is based on the premise that people with developmental disabilities get better care far more cheaply at home than in an institution where it would cost upwards of $100,000 a year.
A state-approved physical therapist recommended accessibility features in the addition that a low-bidding contractor would install for $16,896.
But the state Office for People with Developmental Disabilities approved just $11,817 for the project.
The project remained stalled for months.
The state office changed its decision, but it took weeks for work to resume.
The girls eventually moved in last December.
“It’s better than upstairs,” said Amber, a sophomore at Depew High School.
Amber has a bad hip, and she sometimes struggled to crawl up the stairs on her knees to get to her old room.
Ashley has more severe disabilities; she can’t talk and is fed through a tube. A nurse visits nightly to tend to a variety of health concerns.
Prior to the addition, Timothy Geary had to carry the 90-pound Ashley down from her bedroom each morning at 6 before leaving for work and then carry her back up at 9 each night.
Ashley became too heavy for her mother to carry.
The bureaucratic hiccups continued after the addition was finished – and they’re still not completely over.
Debra Geary said the state required three bids from a concrete contractor for the wheelchair ramp.
But at least 10 contractors the family contacted declined to bid because they were concerned about a delay in being paid by the state, she said.
They eventually did submit three bids. But on the day the concrete was being poured, a state representative called the Geary house asking if the ramp was still needed, she said.
Now, they’re not sure whether the state plans to pay the contractor, even though a physical therapist and the local fire department have written letters to the Office for People with Developmental Disabilities saying it is necessary.
“Even if I have to pay for the ramp, I’m over it. It’s built,” Timothy Geary said.
State Sen. Timothy Kennedy, D-Buffalo, who has made calls over the years on behalf of the Gearys to the Office for People With Developmental Disabilities, said what happened to them is a microcosm of what happens across the state to families who have children with developmental disabilities.
“Families like the Gearys that have fought so hard every single day to keep their children in their homes and not in an institution, the state should be bending over backwards to help them, and because of the bureaucracy that hasn’t happened,” Kennedy said.
Despite the challenges, the Gearys are grateful for all of the friends, family, contractors and even complete strangers who stepped in to help.
They’re hosting a luncheon party today at their home to say thank you to those people.
email: jtokasz@buffnews.com
The room in many ways looks like that of any teenage girl.
But there are unusual amenities, too: an adjustable bed, an oversized doorway and metal tracks on the ceiling that run across the bedroom, down a hallway and into the bathroom.
The features help make this 600-square-foot addition to the Geary home handicapped accessible for Amber and her twin sister, Ashley, both of whom were born with cerebral palsy.
“We call it the twin wing,” said Debra Geary, mother of the 15-year-old girls. “This addition is a world of difference. It’s just a relief on our whole lives.”
It took 20 months and lots of wrangling with state bureaucracy, but Debra and Timothy Geary finally have a home where they can properly care for Amber and Ashley.
This week, they put the finishing touches on a concrete ramp at the front of their house, a last piece in efforts that began in 2011.
“It’s nice to see the light at the end of the tunnel. It’s been a year and eight months of building,” Timothy Geary said.
The process has been anything but easy.
The Gearys knew they had to make changes to their two-story house about two years ago. Ashley, who has severe disabilities, was growing too big to be safely carried up and down stairs.
All of the bedrooms and bathrooms in the house at the time were located on the second floor.
The Gearys were intent on keeping their daughters at home, instead of having them placed in an institutional setting. They decided to build an addition with two bedrooms and a bathroom for the girls on the first floor.
They used their savings – about $25,000 – plus cash donations and donated work and materials from area contractors to build the foundation, framing, walls, heating, electrical and rough plumbing.
They then relied on a New York State “environmental modifications” program that pays for renovations to help people with developmental disabilities stay in their homes.
The program is based on the premise that people with developmental disabilities get better care far more cheaply at home than in an institution where it would cost upwards of $100,000 a year.
A state-approved physical therapist recommended accessibility features in the addition that a low-bidding contractor would install for $16,896.
But the state Office for People with Developmental Disabilities approved just $11,817 for the project.
The project remained stalled for months.
The state office changed its decision, but it took weeks for work to resume.
The girls eventually moved in last December.
“It’s better than upstairs,” said Amber, a sophomore at Depew High School.
Amber has a bad hip, and she sometimes struggled to crawl up the stairs on her knees to get to her old room.
Ashley has more severe disabilities; she can’t talk and is fed through a tube. A nurse visits nightly to tend to a variety of health concerns.
Prior to the addition, Timothy Geary had to carry the 90-pound Ashley down from her bedroom each morning at 6 before leaving for work and then carry her back up at 9 each night.
Ashley became too heavy for her mother to carry.
The bureaucratic hiccups continued after the addition was finished – and they’re still not completely over.
Debra Geary said the state required three bids from a concrete contractor for the wheelchair ramp.
But at least 10 contractors the family contacted declined to bid because they were concerned about a delay in being paid by the state, she said.
They eventually did submit three bids. But on the day the concrete was being poured, a state representative called the Geary house asking if the ramp was still needed, she said.
Now, they’re not sure whether the state plans to pay the contractor, even though a physical therapist and the local fire department have written letters to the Office for People with Developmental Disabilities saying it is necessary.
“Even if I have to pay for the ramp, I’m over it. It’s built,” Timothy Geary said.
State Sen. Timothy Kennedy, D-Buffalo, who has made calls over the years on behalf of the Gearys to the Office for People With Developmental Disabilities, said what happened to them is a microcosm of what happens across the state to families who have children with developmental disabilities.
“Families like the Gearys that have fought so hard every single day to keep their children in their homes and not in an institution, the state should be bending over backwards to help them, and because of the bureaucracy that hasn’t happened,” Kennedy said.
Despite the challenges, the Gearys are grateful for all of the friends, family, contractors and even complete strangers who stepped in to help.
They’re hosting a luncheon party today at their home to say thank you to those people.
email: jtokasz@buffnews.com