Several years ago, or maybe more than several, a cute little baby was born. The baby had more needs than the average infant, and as the child grew, the needs grew proportionally. And suddenly (it didn’t happen suddenly, of course, but the realization stuck you suddenly) that the baby was no longer a baby, and the lifting, carrying, and transferring from bed to bathtub or home to car was no longer as effortless as it used to be.
Kids — and adults for that matter — who have physical disabilities often have trouble getting around at home. Many things in life can’t be fixed, but accessibility challenges, while at times hard to navigate (or fund), don’t need to be accepted as a matter of fate. Read on for more information on home modifications!
What do you need?
The first step to improving accessibility at home is figuring out what it is, exactly, that you need in order to achieve your goal. Ask yourself which tasks are most difficult to achieve due to an accessibility issue and which specific physical components make this task difficult to navigate. Make a thorough list, and ask your family — or your child himself, if it’s relevant— for suggestions!
I don't even know where to start!
Begin by mentally walking through your daily routine with your child:
Chaim wakes up at 7:00 AM and needs to be changed, dressed, and brought down from the second floor to the ground floor for breakfast. I used to be able to carry him down fairly easily, but now that he’s a teenager, he’s become heavy to hold.
His wheelchair doesn’t fit through the kitchen doorway, so we need to lift him through the doorway and strap him into his special chair at the kitchen table.
The school van honks outside at 8:00 AM sharp, and I need to get Chaim — and his wheelchair — down the 5 front steps and into the van.
Chaim’s wonderful school takes care of him until 3:00 PM, and at 3:30 PM, the van is once again faithfully honking outside our home. I need to get Chaim up the 5 front steps, carry him upstairs to his room for a change, and then back down to the living room, where his com hab worker hangs out with him until supper. Supper involves another transfer in and out of the kitchen, followed by another trip up to the second floor. (Feeding is a story for another day.)
Shower time! Showering means getting him over the 16-inch bathtub wall and into that adaptive shower chair which takes up the whole tub. I need to practically climb into the tub myself to adjust the faucet or shower head. Reaching every part of Chaim during the process requires agility. Water sprays everywhere. Chaim cries through the ordeal every day, but staying clean and hygienic isn’t a choice. Sometimes I want to cry with him.
Afterwards, it means transferring a cold, sad Chaim back out of the tub to his bed, changing him into clean PJs, and tucking him in for the night. Whew! It’s been another day in the life of Chaim’s tired mother.
Some home modifications which would make a big difference in Chaim’s (and his mother’s) routine:
Stair glide for the indoor staircase
Wider kitchen doorway
Ramp or lift for the outdoor steps
Roll-in shower
I don’t trust myself to figure it out all on my own.
You can get a professional to help out with the planning. There are people who specialize in this, often physical or occupational therapists, who can come down to your home and do a thorough evaluation and suggest which modifications would be most helpful to implement.
Someone who does this professionally knows what’s out there and may be able to suggest modifications which you didn’t even know were possible and could make a big difference.
If you live in NY, you might be able to get such an evaluation covered by your insurance through NYU’s Rusk Rehab! Have your child’s physician submit the referral form below.
Done. Now what?
You’ve made your list of functional improvements. Great! Now it’s time to put that plan into action.
You’ll want to get a recommendation for a reliable vendor to provide the modifications which you need. Vendors will generally come down to your home for an evaluation to determine which specific type of ramp, stairlift, or whichever other equipment you are installing would best fit your child’s needs and your home setup.
You will usually get a price quote only after the evaluation.
Aren’t home modifications, like, crazy expensive?
Depending what kind of equipment or renovations you are looking into, home modifications range from under 1K to tens of thousands of dollars. Thankfully, in New York, there is funding available to cover many modifications!
If your child has OPWDD or Children’s Waiver, you can tap into the E-Mods program (Environmental Modifications) for funding. E-Mods can cover big ticket items if needed (such as elevators, for example, which can easily cost $30,000-$40,000).
For individuals in New York who need home modifications but don’t have OPWDD or Children’s Waiver, there is a program called Access to Home. Access to Home is available both for Medicaid recipients who have disabilities and also for individuals who don’t have Medicaid, but who can’t afford the modifications. (Eligibility is determined based on median income.) Access to Home is a more limited resource than E-Mods, but it is helpful to many people who need modifications such as doorway widening, ramps, simple stair glides.
Bear in mind that if you are getting modifications covered by state funding, the agency which is servicing you will select the vendor on their own and send them down to you — so on the one hand, you won’t select the specific vendor, but on the other hand, the agency is taking care of the legwork on your behalf.
Call Ezreinu at 718-750-1010 for referrals for agencies who can assist with accessing funding for home modifications.
That’s all very nice, but I don’t live in New York.
Sometimes, we New Yorkers forget that not everyone does… But truth be told, most states have assistive technology programs available, through Medicaid or otherwise, which can help people with disabilities improve their accessibility at home. Reach out to a local organization for assistance.
Not sure who to call? Reach out to Ezreinu at 718-750-1010, and we’ll be happy to help.
You can also try to apply for a grant through a charitable organization. Wheelchairs 4 Kids is a wonderful organization which has provided many grants for individuals with mobility challenges.
With much appreciation to Miriam Gantz of Hamaspik of Kings County for contributing information to this newsletter. Miriam can assist families in Kings County (Brooklyn) with the Emods or Access to Home process. She can be reached at 718-347-8400 Ext. 154.
Shaindy, a sweet 8-year-old girl with special needs, has a hard time keeping herself occupied. During the week, she spends most of her day in school, but on Shabbos, she’s home for the day, and the lack of structure really throws her — and her whole family — for the loop. Shaindy’s mother reached out to Ezreinu for help, and now, a volunteer comes to entertain and play with Shaindy on Shabbos afternoons. 🟦
The Brauns were looking for an ABA therapist who could come to their home to work with their son, but they couldn’t find an agency that had available providers where they lived. Mrs. Braun called Ezreinu and was referred to a local ABA agency which had the availability to service her son. 🟦
Identifying details have been changed to protect client confidentiality.
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