Friday, July 25, 2014

Special Needs Perk Myths

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People seem to think that having a child with special needs comes with all sorts of wonderful advantages.  The word "lucky" rolls off tongues from uneducated people thinking that having a child with a disability entitles us to red carpet treatment with champagne wishes and caviar dreams.  The misconception that we want for nothing, and the needs of our child are continually met. 

This isn't the Life of the Rich and Famous and Robin Leach is not our host.  Having a child with special needs is not a luxury - of any kind.  I don't even want to get started on the word luxury.  It's a word that significantly irritates me every time I think about it.   Life on easy street isn't found in our world - not ever.   And in many instances we are far worse off than the average typical household is.  Here are just a few special needs myths:

Myth #1:  Those with special needs are subject to many discounts & promotions, and financial assistance.
These are the types of things we hear often:
The school system will take care of your child, all of their out of pocket therapy costs can be covered there. 
(People fail to recognize that there are so many more therapies that are often needed besides SLP, PT and OT).

Children with special needs are subject to receiving SSI benefits, so what the mother is unable to work out of the home.
(SSI is based on a parental income and doesn't automatically guarantee a child benefits of any kind)

You get cool discounts and free access to all national parks. 
(I use the word "free" loosely while it doesn't cost to gain access to the parks there is a minimal fee to apply for the pass and there are still restrictions).

Discounts on meals, just like the elderly. 
(These days it's rare when you find a discount at a restaurant for meals for those with special needs, typically only listing discounts for those in their Golden Years).

Medicaid covers all medical, equipment and therapy costs. 
(Medicaid has all these great little rules that assist them with denying all that they can get by with.  You'll hear terms like non-medical necessity, no restorative potential, not a covered benefit.  Medicaid also does not cover a majority of therapy modalities labeling them "alternative").

Grants for therapies are wildly given, and school supplies are donated.
(Finding help through a grant or donation is very hard and often times requiring involved applications to determine eligibility.  This can be in the form of covering only specific types of disabilities or based on financial determinations.  It certainly isn't guaranteed).

Myth#2:   People shower you with free gifts
We're all familiar with those feel good stories that the media reports;  a stranger paying a dinner bill for a family that has a child with special needs, offering a child in a wheelchair a free cookie, loving foundations that throw gifts your way at Christmas and businesses donating handicapped accessible wheelchair vans. But here's the thing - those instances are Rare with a capital R.  Everyone loves a feel good story and while these types of heartwarming reports restore my faith in humanity they are not the norm.  Five and a half years into special needs parenting no one has yet to pay our dinner bill.  When they see my child in a wheelchair who is clearly non-verbal they're afraid to offer him a treat of any kind, and while we've been blessed to find some help at the holidays it is very difficult as so many families are scrambling to do the same and help is not something you can rely upon.  If you stalk any special needs group on social media you'll see hundreds of families begging for handicapped accessible van assistance.  In fact you don't have to look any further than the National Mobility Equipment Dealers Association (NMEDA) site yearly to find thousands of people scrambling to win what is essentially a voting popularity contest to obtain a handicapped accessible van.

Myth #3:  You receive special treatment
Having a child with special needs doesn't shoot you to celebrity status.  Many people think if you get to move to the front of the line at Disney, or get great seats at a baseball game that must mean you're benefiting from special treatment.  The reality is you can't place a wheelchair just anywhere and often times the designated wheelchair areas happen to be up front for access purposes.  Having a child with special needs also comes with a variety of challenges.  Sensory issues, behavioral issues, many of children are medically fragile and they simply cannot handle long waits in line.  It becomes not an advantage or "perk" so much as often a health and safety need and the only potential way of offering inclusion of any kind.

Myth #4:  Accessible Parking
Don't you wish you could park up front?  Likely if you asked most able-bodied people blindly on the street what they thought the number one disability perk is, hands down they'd say accessible parking.  It's not a perk, it's a necessity.  The reality is you simply just cannot unload a wheelchair in conventional parking spaces.  It also happens to be a safety issue as those with mobility disabilities sit at a level that cannot be seen at rear view mirror levels.  Many people without a disability find the urge to often steal these parking spaces and park illegally, much like they felt the need to be first in line to the water fountain in grade school.  Some people just have that "I must be first" problem.   If you asked a person with a disability how they felt about you stealing their spot, they'd likely tell you they wish you'd steal their disability too. 

Myth #5:  Free Money!
The fundraising myth.  Insurance denies you help, your family says they can't help you.  No problem right? Just have a fundraiser of any kind.  A bake sale, a car wash, an online fundraiser, a jewelry or candle party, or a restaurant benefit fundraiser and people will just throw money your way.   Or tell your boss how hard up life is because your child needs a new wheelchair and insurance has denied it because it hasn't been five years since they last paid for one and your office will take up a collection to help.  The truth is the saddest stories bring in the most funding, (those families facing near-death situations or funeral expenses) while the rest of us really don't see a huge success from most fundraising efforts.  And it's not always free, often times special needs families find themselves giving a "commission" or part of their fundraising proceeds, to a t-shirt company, a jewelry consultant, or an online site.   Remember in life nothing is free - not even if you have a child with special needs.

The only one true perk really is that people tend to show their true colors quicker around special needs.   It serves as a fabulous filter for weeding out true assholes from angels. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.