Able Accounts that accept Out of State Residents

There are many things to consider when setting up an ABLE Account for your child with disabilities.

The first step is to go to the Able National Resource Center Website.

There is a button where you can "compare 3 states" or "compare programs by features".

Utah does not currently have an Able Program (as of 7/1/2020).  So you you have to use a program that is out of state.  But not all states accept people from out of state.

As of 7/1/2020 there were 24 states that accept people from out of state.  Here they are...

Alaska
Arkansas
California
Colorado
Delaware
District of Columbia
Illinois
Iowa
Kansas
Maryland
Massachusetts
Michigan
Minnesota
Mississippi
Montana
Nebraska
Nevada
New Jersey
North Carolina
Ohio
Oregon (they have 2 programs listed...1 says yes to out of state and 1 says no...so I am not sure)
Pennsylvania
Rhode Island
Virginia (they have 2 programs listed...the both say yes to out of state...but I am not sure which 1 you would pick...so I am not sure)

Swimming pool floats for people who cannot hold their head up

Sprint Aquatics body fit collar $24.50
https://www.sprintaquatics.com/SPRINT-AQUATICS-BODY-FIT-COLLAR/productinfo/707/

Kiefer Senior inflatable swim collar $19
https://www.sprintaquatics.com/SPRINT-AQUATICS-COMFORT-FLOAT/productinfo/683/

Kiefer flotation set $39
https://www.kiefer.com/kiefer-flotation-set

Kiefer adjustable foam collar $40
https://www.kiefer.com/kiefer-adjustable-foam-swim-collar-adult?gclid=CjwKCAjw7-P1BRA2EiwAXoPWA7iBAEZf0fmt-RjZWUksJ9uMvHdxTB9eceQkNXRP0ivWqCf73nVHexoC-RIQAvD_BwE

Theraquatics posture pillow $87 (comes in adult, child, baby sizes)
https://www.theraquatics.com/9307a.html

Theraquatics body sling $111 (posture pillow also pictured)
https://www.theraquatics.com/9875.html

Theraquatics cerebreal pasy float suit $450
https://www.theraquatics.com/thcepaflsu.html

Hi Support upright float

Hi support upright float with toggle float

Theraquatics hi support upright float with seat $132 (can combine with neck pillow or posture pillow or upright toggle float)
https://www.theraquatics.com/hisupport-upright-float-with-seat.html

Theraquatics Cerebral Palsy Square Float $189
https://www.theraquatics.com/cepasqflba.html

Theraquatics Rosie's Collar $200
https://www.theraquatics.com/rosie39s-coll39.html

Theraquatics Aqua Duck Float $80
https://www.theraquatics.com/aqua-duck-float.html

Danmar sectional raft $245
https://www.danmarproducts.com/ecommerce/swim-rings-bu-484.html

Pool Float $99
https://www.frontgate.com/2-22-resort-pool-float/1241358?listIndex=0&offers_sku=163124%20SEB&SourceCode=ZZ51120&intlShippingCtx=US%7CUSD&catargetid=120245420002921314&cadevice=c&gclid=CjwKCAjw7-P1BRA2EiwAXoPWA87XlVyEHEuoY8owPVCgmYsS9F6NgdHAI5a2qpdTEZGy8t5c07f55BoC3ScQAvD_BwE

Life Jacket Adapted starting at $170
https://www.pfd-a.com/

Head Float and stabilization bar $254
https://www.flaghouse.com/Recreation/Water-Sports/Floating-Devices/Head-Float-and-Stabilization-Bar.axd

WaterGear Flotation Collar $69 (Photo taken from a family's review at https://arearrangedlife.com/adapting/to-swim/)
https://www.theraquatics.com/water-gear-water-cell-flotation-collar.html

Theraquatics foam collar $20 (Mikael had this one for Ellie and Ellie hated it)
https://www.theraquatics.com/6001c.html

Bikes/Bike Trailers for kids with disabilities

Trailers

Wike large special needs bicycle trailer (can purchase additional wheel for the front to use as a stroller)  MIKAEL OWNS THIS ONE

$750 http://www.wike.ca/special_needs_large_bicycle_trailer.php

Lightfoot Cycles (can wheel your wheelchair onto the trailer)

http://www.lightfootcycles.com/special.php (wheelchair cab)

DIY turn a regular kids bike trailer into a trailer that you can wheel your wheelchair onto

https://photokapi.com/tag/bike-trailer/

In Utah UCAT can build you one from a regular bike trailer
See a video here https://youtu.be/AnNcBoWScdM
Here is UCAT's website https://jobs.utah.gov/usor/vr/services/ucat.html

BYU made opensource plans for a trailer/jogger
See a video here https://news.byu.edu/news/engineering-students-build-adult-sized-bike-trailer-professors-son-cerebral-palsy
Find the instructions here https://capstone.byu.edu/wp-content/uploads/2019/04/BTJInstructionsv0.11.pdf
Find the Drawings here https://capstone.byu.edu/wp-content/uploads/2019/04/OpenSourceBTJDrawingPackage.pdf

Bikes with disabled person in front

Special Bikes UK (Person with disabilities in front)

https://www.specialbikesuk.com/

Duet (Person with disabilities in front.  They have a power assisted version or a regular bike)  (You can buy this on many websites, this is just 1 example)   MIKAEL HAS USED THIS ONE AT NAC AND LOVES IT FOR ELLIE

$5400 http://www.flaghouse.com/Duet-Cycle-item-31248&srccode=117242

VanRamm (has an attached wheelchair in front or a platform in front for the wheelchair to go on)

https://www.vanraam.com/en-gb/our-bikes/wheelchair-bike

DIY wheelchair in front
https://www.youtube.com/watch?v=8-9Lzo_fc0o&feature=youtu.be

This person on eBay makes bikes

https://www.ebay.com/usr/cajun_deals51

Bikes with disabled person in back

Mission Piggy back

$754  https://www.bikemania.biz/mission-piggyback-mk2-folding-teen-to-adult-special-needs-bike-trailer-with-24-wheels.html?utm_source=google&utm_medium=cpc&adpos=&scid=scplpMission_Piggyback_MK2_A_SN-24&sc_intid=Mission_Piggyback_MK2_A_SN-24&gclid=CjwKCAjw7-P1BRA2EiwAXoPWA06LRX7e9GKa9mkoJHLZfwlHaadsmPdqzUDchMTzcUq1Lkfu6MHldhoCBJAQAvD_BwE

Bucket bikes/Family Cargo Bikes 

(might need to put person in a tumbleform and attach it. )

Madsen bucket bike(has electric or manual versions)

Lots of versions starting at $2000 https://www.madsencycles.com/collections/2020-madsen-bikes

Bunch Family Cargo Bike (has electric or manual versions)

Starting at $3000 https://bunchbike.com/collections/bikes

Yuba

$2500 https://yubabikes.com/cargobikestore/supermarche/?utm_medium=cpc&utm_source=shopping&utm_campaign=supermarche&utm_content=__c&gclid=Cj0KCQjwzN71BRCOARIsAF8pjfhi4V0Pws-oX0lw4sZr1nHa_7NM_NQinFq0SFUMZ6B13VUs6XUadIUaApJzEALw_wcB

Ferla Family Bikes (has one with a canopy over the top)
https://ferlafamilybikes.com/?variant=28953624215636

Tricycle you ride with the disabled person

This one is cheap $230...but would need to be adapted
https://www.wayfair.com/Gracie-Oaks--Gaughan-Rustic-BicycleInspired-Flower-Cart-Metal-Planter-Box-HSDL2695-L349-K~GRCK1584.html?refid=GX433573889668-GRCK1584&device=c&ptid=902704678488&network=g&targetid=pla-902704678488&channel=GooglePLA&ireid=78654539&fdid=1817&gclid=Cj0KCQjwzN71BRCOARIsAF8pjfg4mEuNogMspOmGYacpNqKn-gIlRZB2RRA27klNSFTtAOtAsespcAEaAqRoEALw_wcB

Buddy Trike

$990 https://www.bikemania.biz/buddy-trike-2-passanger-tricycle.html?utm_source=google&utm_medium=cpc&adpos=&scid=scplpBelize-96603&sc_intid=Belize-96603&gclid=Cj0KCQjwzN71BRCOARIsAF8pjfiM16oLTdvNFt1yW8SbAehpW0z5KKNHdvwBdsWgm9DGbzsMyLK4JE0aAj35EALw_wcB

Lightfoot Cycles
https://lightfootcycles.com/collections/tandem-recumbent-trikes

Special Bikes UK (Person with disabilities in front)

https://www.specialbikesuk.com/

Tricycle the disabled person rides alone

Rifton

https://www.rifton.com/products/special-needs-tricycles/adaptive-tricycles-r100

Freedom concepts (has lots of options including pedals roll as you push from behind, can lay on stomach instead of sit up, can use eye to eye headrest if you have no head strength)  MIKAEL IS IMPRESSED WITH THIS ONE...IT HAS LOTS OF SUPPORT OPTIONS

http://www.freedomconcepts.com/

Triaid (many types of trikes)

https://www.triaid.com/

Amtryke (many types of trikes)

https://www.amtrykestore.org/

Lightfoot  Cycles
https://lightfootcycles.com

Special Bikes UK (Person with disabilities in front)

https://www.specialbikesuk.com/

Training Wheels

$130 Fat Wheels Adaptive training wheels

https://www.fatwheels.com/


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Do you have any other recommendations?  Please comment below
If you like this list, please consider "LIKING" my FB page https://www.facebook.com/SupportedInOurTrials/

Covid help for those with Rare Disease

The National Organization for Rare Disorders, Inc. (NORD) launched a financial assistance program for rare disease community members impacted by COVID-19. The NORD COVID-19 Critical Relief Program provides up to $1,000 annually to those eligible to support critical, non-medical needs including, but not limited to, utility bills, cellular or internet service, emergency car repairs, and rent and mortgage. To learn more, please visit:

https://rarediseases.org/nord-launches-financial-assistance-program-for-rare-disease-community-members-impacted-by-covid-19/?fbclid=IwAR38i9xQNEsexUTbw8yZx96quer2nxzfx0xrPBWbJ95re61QixLU3TPHD-Y

Compilation of preparedness tips for Special Needs Families

Here are some various blog posts I have written about emergency preparedness.

How to stock up on meds

72 hour kit for medically complex kids

Camping when you need power

What other emergency suggestions do you have?

Please like share and tag our FB page for future posts.
https://www.facebook.com/SupportedInOurTrials/

How to prevent the spread of germs

I have a 17.5 YO daughter who has severe disabilities.  A simple cold will land her in ICU with a breathing tube down her throat for a month.  We have been forced to be constantly aware of germs.

Now that the whole nation is being more aware of germs due to the coronovirus, here are my suggestions of how to avoid germs.

This is adapted from another blogpost I wrote called "What to do when your child with multiple disabilities gets sick"

Prevention
-Stay home.  Do not even visit family and friends, even if they are healthy.

-Go out only when absolutely necessary

-Put a sign on your door saying that you want ZERO visitors.  And follow your rule.  Do not even allow family and friends over, even if they are healthy.

-Do not go where you know people are sick (ie:  your sister's kids are sick, don't go visit)

-When anyone comes home from anywhere (school, store, etc...) wash hands or use hand sanitizer IMMEDIATELY.  Have a bottle readily available and kept in the same place somewhere near the door.  Or better yet, have everyone change clothes.  Or better yet, shower and change clothes.

-When you absolutely need to shop, go with a purpose, get in and get out.

-When you are out, use hand sanitizer before getting in your car

-Anything new you bring into the home (cans of food, etc) need to be sanitized

-Assume everything you touch outside of your home (gas pump, food at store, door handles) is contaminated.  Even at your place of work.

-Frequent hand-washing during the day.  Minimum of 20 seconds (Sing Happy Birthday twice)

-Watch a video about the 7 steps of washing your hands

-Wipe all high touch surfaces once a day with lysol wipes...doorknobs, phones, cupboard handles, etc...

-Try hard not to touch your face.

-Wipe the high-touch areas of your home at least once a day (doorways, doorknobs, keyboards, phones, lightswitches)

Once the sickness hits someone in the family
-Separate the sick and healthy people.  At the minimum contain the sick people to 1 room in the house.  Or even better, are there other solutions to separate the sick from the healthy?  Can the healthy people stay in a tent in the yard?  Can the sick person stay in your camping trailer?  etc.  Get creative.


-The sick person is not allowed to wander the house, they MUST stay in 1 room.  

-Healthy people do not enter the location where the sick person is.

-Close the ventilation (Heat/AC vents and cold air returns) in the room where the sick person is.  You can shove towels or things in the registers as well as closing them off.  Open the windows several times a day in the "sick room".

-Dissolve Emergen-C or Airbourne and give  multiple times per day to the rest of the family to boost immune system

-Use bleach in each load of dishes run through dishwasher or use disposable paper products

-Any dishes that need to be washed by hand, wash in soap and water, then soap for a minute in water with bleach, then rinse.

-Wash clothes in hot where possible and dry on High/Hot

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See my other post about Tips to Survive Staying Home

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What other suggestions do you have to prevent the spread of germs?  Please comment below!

Tips to survive staying home

I have a 17.5 YO daughter who has severe disabilities.  We spend every Oct-Apr (RSV season) at defcon 4 (on extreme precaution of germs).  She has had more hospitalizations than I care to count and I (Mom) stay with her isolated in the hospital the whole time, sometimes for months on end.

Now that the entire nation is at Defcon 5, I thought I would share some tips I have learned over the years to survive isolation...

(this post is adapted from my post "Tips for Parents to Survive while their child is in the hospital")

#1)You will need to find what works for you, don't feel like you have to do the things that I say.

#2) Rely on God.  Pray.  Spend time studying God's word daily.

#3) Breathe.  No seriously!  Focus on your breathing.  Slow your breathing.  Do relaxation exercises,  Deep breaths.  Cleansing Breaths (breathe out the bad energy/thoughts/stress).  And above all just remember to breathe.

#4)  Start a blog or journal to get out your feelings

#5)  Find a hobby you can do while at home.  Over the years I have done cross-stitch, digital scrapbooking, hand quilting, and reading.  Something to keep your mind and hands busy. Maybe you want to read a book that has been sitting on your nightstand for 3 years, hahaha.  Maybe you have 20 unfinished projects you can work on.  Maybe you can improve your yard or plant a garden.  Maybe you can work on family history.

#6)  Get up every morning and get ready.  Shower, do your hair, do your makeup.  Get dressed. It will help you feel better and have more patience. 

#7) Go on a walk or get some exercise every day.  Getting some exercise will help with your endorphins and mood.

#8)  Get some fresh air.  Open your windows and doors.  

#9) Which brings us to... get outside at least once a day.  Breathe some fresh air.  Look at nature. The air in your house will start feeling gross and germy...get outside!  You will feel so much better after doing it.

#10) Try to eat healthy. Stress can make your bowels bonkers, don't add to the problem by eating junk.  You really will feel better when you eat healthy.  

#11) Find something fun to look forward to.  Maybe you have a daily time that you facetime someone, maybe you make a special treat to share with your family.  Maybe you plan a game night.  Find things to do that are within your limitations.

#12) Focus on the present and find the blessings.  Do not think too much about the future.  Focus on the positive.  Maybe make a gratitude journal.

#13)  Split responsibilities if you have a spouse, kids or someone to help you.  This way the burden doesn't fall on one person.  Communicate about the responsibilities, do not assume your spouse knows what you want them to do.

#14) Find time to be alone each day.  Have a quiet time.  It gives you time to decompress, take a nap, have some time to recoup your expended energy.

#15) You can stress/cry/worry or you can laugh.  Try to laugh at the situation.

#16) Limit anything that is stressing you out...media, social media, people, etc

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See my other post about "How to Prevent the Spread of Germs"

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Those are my suggestions.  I would love to hear what helps you.  Please post below.