Skip to main content

Equipment Mistakes

Ordering equipment for your child with special needs is time consuming, exhausting, stressful and full of ways to make big mistakes. Please learn from me - I have made those mistakes!

1. Work with others. School and private therapists are an invaluable resource. Use them all to make the decision. For whatever reason, we once ordered a walker for Ben without consulting other therapists and we made a big mistake. Ben was not ready for this walker and it sits in our attic right now.

2. Do not rush. I knew we had about 7 months to order three pieces of equipment for Ben in order to be in the insurance cycle for this year. I sent emails to the therapists letting them know that I wanted to order equipment for Ben. This started a dialogue with all the therapists.

It took time to find a reputable company that took our insurance. Often these companies are understaffed, so make sure you can get the salesman to meet with you, be available for questions and be willing to come out to the school and your home for consultations. Many times, the therapists have relationships with the equipment companies and can make recommendations.

3. Try it out first. We tried out the walker Ben was using at school at home and at private PT. Ben's community workers were also able to weigh in on the decision. After months of going back and forth, we knew we were all happy with the one he was using at school.

There are also lending libraries that may help. Ben has been borrowing a Rifton Blue Wave Toilet since November and we are now ordering one for him. I cannot imagine life before it.

4. Size matters. Measure once, check the charts for fit and then measure again. If you do take several months for this process, your child may have grown an inch or two or gained a few pounds. And think about when you will be able to order again - it may make sense to get the next size up, or it may not.  In North Carolina, you may only order a walker every three years. Be sure to know the rules and regulations.

5. Play the funding game. Check with your insurance - what is your deductible, co-insurance, co-payments, out-of-pocket expenses? If they will be met soon, wait to order. Also see what outside funding sources may be available. A portion of Ben's cranial helmet was paid for by a fund through a company. Ask around, you may be surprised how local organizations are willing to help.

Comments

  1. Vanessa,

    I was reading your post and saw Rifton, a company we love and have purchased trikes from, a few times, for our son, Matthew. Well, what you shared about the "Rifton Blue Wave Toilet" caught my interest because we are looking for a shower chair-toilet chair for our child and we have an organization who will possibly fund it. I have the application but I haven't been able to fill out the application completely to include the exact chair that we want for Matthew (because I am having trouble finding one). Until just now, that is...THANKS TO YOU!!

    I am viewing the Rifton Blue Wave Toilet chair now on their website and it looks like a great fit for our child and his needs.

    I will also be looking into possible lending libraries in our area to perhaps borrow it first.

    Thank you, thank you, thank you sooooo much!!

    Sandie

    ReplyDelete
  2. Sandie - If you have any specific questions, please email me. I'd be happy to talk to you. I do not have any concerns about it, but can share some trouble points that may be just a boy thing, if you get my drift. And I suggest getting the tray with it as well. It offers extra support and another block for that boy problem I mentioned. Glad this helped out.

    ReplyDelete
  3. Vanessa, I was just exploring the Rifton Blue Wave Toilet again tonight and told my husband that I think I will e-mail you to ask some questions that I am having about it (with respect to the *ahem* boy problem and splash guard and a few other things to get your input(since you are using it with Ben).

    So it was a nice surprise when I came back to your blog to read this post again and just now found your reply comment to me. Thank you very much for your offer to answer my questions. I appreciate it so much. Although I must admit that my old computer is no longer working so I lost access to my e-mail program and address book with all e-mail contacts, including your e-mail. Could you please e-mail me at your convenience so I can get in touch with you? Thank you very much.

    Sandie
    hope@aracnet.com

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru