Special Needs Guardianship

Our girls turned 18 last March.  Now for most parents that is both a nerve wrecking and joyous milestone.  Your child is now an adult and can make choices without you.  And you hope that you’ve raised them well enough that they make the right choices.  Well our experience is much different than this.  Both girls are special needs and both have multiple permanent disabilities.  Cereal Palsy, Autism, Anxiety disorder, chronic lung disease, feeding tubes, brain damage, the list goes on.  And both are severely delayed….Hunter more so than Hannah.  Hannah can talk a little and sign and write but cognitively she about maybe 8-9 years old.  Hunter on the other hand cannot speak, cannot sign, cannot write and cognitively is about 1 year old.  She is a baby who is now an adult.  For us, turning 18 doesn’t mean freedom, it means our jobs as parents just became 100 times harder.  Despite their disabilities, despite us being their parents, once a child is 18 you can no longer make decisions on their behalf…..Unless…..you file for guardianship of the person.  That is the official term.  So although we are their parents and their primary caregivers and have been their entire life, if you do not file for guardianship you are no longer allowed to make decisions regarding their medical needs, their education, their finances and not even their habitation.  Without guardianship in place the two people that know them the best and have raised them would eventually be striped of their decision making capabilities.  That is our reality.  It’s not enough that everyday is a struggle to keep them healthy and alive but something so simple as turning 18 can throw a huge monkey wrench in to your everyday life.

So before they turned 18 we started the guardianship process.  Which you cannot do on your own.  You HAVE to get a lawyer.  Again, it’s not enough you’ve raised these children their whole life you now need an attorney to file the paperwork for you and tell the court that you need to obtain guardianship.  And it is not cheap.  And did you know that the attorney only represents you as the guardian…..you have to also obtain an attorney ad litem to represent the children and their best interests.  So not only do we have to pay for our attorney we now have to pay for their attorney.  Granted, the fee isn’t nearly what the other one is but it’s money we don’t have.  This is what special needs parents face….years and years of sleepless nights……dealing with one after another of government agencies to get your kids the support they need……never knowing if a simple cold will turn in to pneumonia and ultimately kill your child…….the endless doctors appointments and therapies……..a garage filled with medical supplies and never knowing if Medicaid will suddenly decide not to provide them anymore…….person after person in your house day after day and never having an ounce of privacy…….All of this culminates in to that moment that your child turns 18 and you suddenly have to “ask permission” to continue to care for them and fight for them.  And if that wasn’t enough, you have to empty your bank account or get a loan just to even do it, when all we want to do is to continue caring for our children……our sweet girls who cannot care for or defend themselves.  

So we wait…..we wait for our court date to hear the final answer and we do it completely broke with no other resources to pull from……..that is our reality.
  • Anonymous 
    • $200 
    • 38 mos
  • Bev Shaw 
    • $50 
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  • Anonymous 
    • $100 
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  • Ruth Overton 
    • $100 
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  • Debby Henderson 
    • $20 
    • 38 mos
See all

Organizer

Michelle Ivy Tortorice 
Organizer
Katy, TX
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