Ideas for Special Needs Families
Click pictures to enlarge
What do you do for a child who is so disabled she can't even hold a toy in her hand? This is Emma's favorite activity and it's indoors so she can enjoy it year round. All it takes is 2 pieces of 1.5 inch square pipe which I got from a local scrap yard. They fit perfectly into a 2x4 joist hangar which allows for easy mounting onto a wall.
This is our pride and joy, a roll-in shower. We simply removed the bathtub, tiled the floor, and water proofed the walls. We left the drain and faucet where they were so there were no plumbing changes. For the walls I chose cultured marble panels, not the cheapest option but they last forever and look awesome.
The floor has to slope towards the drain but instead of lowering the drain and floor we saved money by sloping the tile upwards across the floor. To make this work we had to do two things. 1) I bought a threshold ramp (that's the black rubber thing in the photo) so we can roll the wheelchair up onto the raised area. 2) I bought a "toilevator" to raise the toilet. Both can be purchased from most mobility web sites.
I saved a lot of money on the shower curtain by buying the ceiling track from a boating supply web site instead of a medical supply web site. They're flexible so you can bend them in any configuration.
The entire cost of the project was about $4,000 which included $1,000 for labor, and $2,000 for the cultured marble panels (installed).
Seems like doorways are never wide enough for a wheelchair but, for about $17, you can make any doorway 2 inches wider by simply replacing the hinges with offset hinges. It's so inexpensive and easy, I replaced the hinges on some of our doors even though our home was built for a wheelchair and already has extra wide doors. They work by swinging the heel of the door out of the way instead of leaving it in the doorway like standard hinges.
Just Google "offset hinges". When comparing prices be sure to note whether the price is for 1 or 2 hinges and shipping.
Those swim toys called Noodles are invaluable and the skinny ones cost about $1 each. They are really easy to cut with a kitchen steak knife and, since they're hollow, you can make a length-wise slit (spiral cut is best) and snap them easily over things like bed rails. The uses are almost endless.
Sliding glass doors can be challenging for wheelchairs. We were frustrated by the usual solutions for securing the door. The security bars we bought at hardware stores were disappointing. Some weren't wide enough (we have extra wide sliding glass doors to accommodate a wheelchair). Some didn't even secure the door. So we ended up just using a stick in the door track and killing our backs until we found this. It's made by a company about 30 miles from where we live. It's a really cool solution and it's easy for the person in the wheelchair to operate if they have use of their arms.
Click the picture to go to their web site and see how it works.
Need a sturdy changing table? Used kitchen or bathroom cabinet base units sell really cheap. I found this on Craigslist. The formica top is easy to clean and impervious to spills. Look at all the storage underneath too for diapers and supplies. (The black stuff on the back is sticky back padding so Emma doesn't hurt her feet when she kicks.)
1. I've used them for padding on Emma's bed rails
2. I put the fat ones under her mattress to create a side-to-side bowl effect to keep her from rolling into the bed rails.
3. They make great padding for sharp edges like the shelf over our changing table.
4. They make great padding for Emma's bathing chair.
5. They make great play toys for Emma. Because she's quadriplegic she can't hold on to regular toys.
Most people think an audio/video surveillance system is a luxury. I once owned a home care agency so I know the caregiver industry better than most and I beg to disagree. The problem isn't so much abuse, although that does happen, but neglect and petty theft which are rampant in the caregiver industry. I won't go into the details but, if you have a disabled child and he/she is left alone with a caregiver or nurse, you NEED a surveillance system.
The objective with a system like this isn't to catch offenders but prevention. Remember: We have a strong tendency to do more of what is inspected than what is expected. That's why a hidden nanny-cam style setup isn't adequate. If the cameras are hidden there's no preventative measure.
I have a 16 camera system that records onto a DVR (no tapes) but an 8 camera system would have been adequate. The cost of my system was $899 for everything, DVR, cables, and 16 color cameras equipped with night vision. I later added microphones to a few of the cameras. We have 2 styles of cameras. The top picture shows a bullet camera, very effective and very conspicuous. Most of my cameras are this style. In areas such as the living room I used dome cameras because, even though they're still obvious to any caregiver, they blend in a lot better. You've probably seen dome cameras at stores and fast food restaurants.
If your child uses a feeding tube these ideas will extend the life of those expensive tubes and keep them cleaner and safer. How? By hanging them vertically so they drain and stay dry.
Wire Rack: The gaps between the wires just happen to be slightly narrower than the width of the feeding tubes so they slide in/out easily yet stay there securely. There's plenty of room for syringes and meds too. You can find these kitchen racks almost anywhere for just a few dollars in stores like Wal-Mart.
Curtain Rod Bracket: Yeah, that's a standard bracket for mounting a curtain rod. It has an adjusting screw to make it clamp down tight on a curtain rod but it also allows you to adjust it for the perfect amount of width to suspend your feeding tube.
The span in our sunroom is just over 11 feet and this will support my 200 lbs with ease. If you need a longer span you can use 3 square pipes and 2x6 joist hangers. For a small fee the scrap yard will cut the pipes to your measurement and drill the holes for the eye bolts.
This is a unique application, not something most people would have need of but I included it here just to show how innovation is the key to living with a special needs child. I don't drive due to my own disabilities so I had a special hitch made so I can tow my daughter in her wheelchair with my mobility scooter. It lifts the front wheels of the wheelchair off the ground so we can travel on any terrain without damage to the wheelchair. Emma absolutely loves it.
A huge step up from our roll-in shower is this ceiling track shower system.
Advantages over roll-in shower:
1. No bending: You can raise or lower the sling to any height you want so you can shower the person at whatever height works for you.
2. You can immerse the person in the tub while still supported in the sling.
3. The perineal area is exposed making cleaning of that area quick and easy.
4. You can move the person in any direction (up, down, side-to-side, spin) with finger tip control to the exact location you desire.
5. You still have the original tub/shower for use by other family members (curtain rod swings back into normal position).
6. Same system also lowers person onto toilet.
Disadvantage:
1. Cost is higher but Medicaid paid for ours.
This photo doesn't show it well but the shower sling is an open mesh so you can wash the person from outside the sling.
Your child needs a diaper change and she's too big for the infant changing stations in public bathrooms or you're a male caregiver like me with a female client. What are you going to do? I put the changing table pictured above inside this trailer. You just drop the spring loaded rear ramp and roll the wheelchair inside. There's room for a hoyer lift and supplies but it's small enough to tow with a minivan. It's ideal for camping or traveling but it's perfect for a day at the park too. With inside lights and inside height of over 6', it's easy on the caregiver and with some cute trailer decals you have built in disability awareness.
This is the best way I've found of dealing with people who stare. Many adults are afraid of saying the wrong thing so they don't say anything at all so I just give them one of these cards. It breaks the ice and starts the conversation and it gives them a place they can go to get more information on their own. Business cards are readily available online. You can usually get 250 cards for $10 or 1,000 for $20.
Wheelchair camping; the words don't often go together well but, if there was ever a tent with this in mind, this is it. One entire side is a door so getting the wheelchair in/out is easy and that nasty flap along the floor is so wide it lays flat. It's extra large, 10'x14' with 6' height throughout, not just the center, so transfers are easier and you've got somewhere to put the wheelchair. It has a back door and can be easily setup by one person. It's called a Colemen 8 Person Instant Tent. There are smaller versions of this tent but, with a wheelchair, you'll need the 10x14.
This device allows you to push a wheelchair with one hand. It's called an Easy-Stroll and, although it's made for strollers, it works well on most wheelchairs as long as you have a horizontal bar on which to attach it. They cost about $27.
Need shade or protection from rain for a wheelchair? A standard umbrella is too small so I've equipped my daughter's wheelchair with a golf umbrella. As you can see the size difference is substantial. Click the photo for mounting details. I chose one with UV protection so it's cooler on summer days. I tried a lot of mounting solutions and only found one that worked. It's made by Bag Boy for a golf cart and it sells for $20. The others were so flimsy they all broke in less than a day. The Easy-Stroll shown above makes it possible to mount the umbrella low to give better protection from rain and sun.
Another idea for a child who can't hold a toy in her hand. It's made from PVC pipe available at any hardware store. Emma doesn't have control of her hands but she has a little control at the shoulder so she can whack the hanging toys with her arm or head. By usng uprights of different lengths it can also be used while the child is on the floor or in bed. Just don't glue the joints so you can change the uprights.
Gift ideas for the visually impaired: A wall mural with lots of color. Cost: $69 at toysrus.com. Time to install: 2.5 hours.
The picture on the adjacent wall may look small but it's almost 4 feet wide. It's a photo of Emma's favorite activity, riding behind Dad's mobility scooter, enlarged enough that she can see it. The photo was taken with a digital camera and enlarged and printed using free software (Easy Poster Printer).
Wheelchair van: It's the number one unrealized need for families with severely disabled children. The reason is it costs $10,000 to add this to most vehicles and insurance doesn't cover it. Then, if you do get one you find it's too small. We solved both issues by buying a shuttle bus. There isn't much demand for these so they go cheap. You can have your pick for about $7,000 and, if you buy at the auctions where the dealers get them, you can get them for under half of that and the vast majority already have a wheelchair lift. But what about fuel economy? Believe it or not, this one goes just as far on a gallon of fuel as a full size van. That's because it has a diesel engine, another common option on these vehicles. A shuttle bus isn't for everyone but it is something to consider. Click the image to open another window with more information and more pictures.
The ultimate way to go for a wheelchair and it won't cost you a dime more to make it accessible. They're called toy haulers and they're designed for people who want to take their quads (ATVs, motorcycles, etc.) with them. It just happens they're perfect for another kind of quad. My daughter is quadriplegic and this trailer even has room for her hospital bed and my mobility scooter. From the axles forward it's like any other travel trailer but everything behind the axles is just open space with tie downs, perfect for wheelchairs and equipment like hoyer lifts, hospital beds, etc. Best of all, they don't cost any more than any other kind of travel trailer.
