Governor Jeb Bush - Please Help Us

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The first communication to Governor Jeb Bush, circa 2003, mom is disabled, begging for help.

Submitted: April 07, 2016

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Submitted: April 07, 2016

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July 3, 2003

The Honorable Jeb Bush

 

Re: K Pa

DOB: 1999

Dear Mr. Bush:

Please let me introduce myself.  My name is L Pa.  I am the mother of two beautiful little girls – K (3) and S (1).  Both of my daughters are miracles, in their own right.  K came into my life through adoption, here in Florida, and S is a product of divine intervention.  Both of my children suffer from disabilities which appeared in their infancy.  S is allergic and asthmatic, and K is suffering with severe autism and many other disorders.  Over the past year and a half, my life has gotten quite overwhelming.

I am writing you, today, to beg for some help to keep my family safe and together.  Our situation has escalated in intensity and expense (physical, emotional, and financial) to the point where I am afraid I will have to place my daughter, K, into a State-run facility for care.  I have exhausted every lead, trying to obtain support services to help with my daughter’s significant daily needs, and have come up empty repeatedly.  Most recently, our “case” was brought before the Developmental Disabilities “Crisis Board;” we have been waiting three months for this hearing – our “case” was not funded, due to budgetary constraints (sixty cases were heard, only enough funding for thirty).  This is the hardest letter I’ve ever had to write – this child is my heart. 

Please let me explain our situation.  K's autism is confounded by multiple health issues.  She has significant and global developmental delay, hypotonia, metabolic disorder, malabsorbtion, allergic gastroenteritis and colitis, candidal enteritis, demyelinating autoimmune disease, cerebellar ataxia, mercury and arsenic toxicity, and other abnormal blood chemistries. 

Her current health situation requires a spectrum of intense services and care.  She requires a specialized diet of chemical-, pesticide- and allergen-free foods and liquids, taken with digestive enzymes and numerous nutritional supplements; to ensure her continued growth and weight gain. She has extreme difficulty with most activities of daily living.  She lacks the motor planning skills to perform self-care.  She is not able to feed herself meals, toilet herself, dress or undress herself, or bathe herself.  She has severe behavioral problems and mood swings.  She needs help and close supervision, constantly.

K needs to be monitored during all waking hours because she is unaware of environmental dangers and the consequences of her actions; she is especially at risk for injury or death because of her propensity to elope.  She will attempt to escape the house through locked doors, windows, and porch screens; when she succeeds, she usually runs directly into the street regardless of traffic.

Additionally, K’s disability is endangering her little sister.  K does not understand the impact of her behavior; if unattended, Kiera pushes her much smaller, one year old, sister down the stairs, off of furniture, or into objects, she will throw her sister to the floor by her neck, throw or swing large objects at her sister's head, wrap belts, cords, or other objects around her sister’s neck and try to pull her around, and pull chairs out from beneath her sister.  Without my constant supervision, K could easily, seriously, injure S. 

I have been working with several specialists, painstakingly, to try and find the best combination of medications and therapies that may eliminate K's symptoms and improve her situation; each change yields a little progress, but so far we have not been entirely successful.

The bottom line is that K has needs that require many “services,” yet I am, virtually, the sole daily and consistent caretaker/personal care assistant/behavioral analyst/physical therapist/occupational therapist/speech therapist//habilitation counselor/jailer for her; we have no family or other support.  My responsibilities, in caring for K and S, leave me an average of three hours each night, for sleeping; and my own personal care is often disregarded, due to time constraints.  I have pursued this exhausting regimen for over eighteen months, and my health is starting to deteriorate. 

K's disability results in a broad spectrum of extreme needs and care.  I struggle to implement her diet, therapeutic, prescription, and supplementation plans while maintaining a constant, vigilant watch over both small children.  I am not able to work, because of the burden of effort and time K's regimen imposes.  An analysis of the minimal time requirements expended, to support this family’s needs includes:

In one week - 168 Hours, I spend every waking moment dually– maintaining a vigilant watch on K and accomplishing the following tasks:

  • 40 hours a week shopping for appropriate foods and preparing, cooking, packaging, and storing them
  • 7 hours a week performing supplement preparation
  • 21 hours a week feeding K
  • 10 hours a week attending appointments with providers
  • 14 hours a week for home-based therapeutic intervention (I perform)
  • 25 hours a week for the household - cooking, cleaning, laundry, shopping, cleaning up children’s messes
  • 7 hours a week performing diaper changes
  • 12 hours a week bathing the children, brushing their teeth, and dressing them
  • 3 hours a week procuring or making therapeutic tools, aids, and guides
  • 21 hours a week I sleep
  • 6 hours a week, providing S with breathing treatments – as needed
  • 2 hours a week - the remaining time is relatively discretionary – I can bathe and dress myself, educate, and snuggle the girls. 

My husband is home in the evenings, after working long hours, and does help out wherever possible; but the burden of care rests with me.  We have no family or support system to help meet K's overwhelming daily needs.  As you can see, I am left with little time for sleep and personal care, and our savings are long gone.  K's adoption required significant financial resources, and marginal insurance coverage caused us to spend the rest – at this time, we are rotating growing credit card debt, to continue medical care and meet her biomedical needs. 

We are in dire need of support to meet K’s medical and physical needs.  Without support, I cannot continue to meet Kiera’s needs, and will be forced to explore placement options.

With appropriate dietary, supplemental, prescription, and therapeutic intervention, I am certain K's overall prognosis is very good.  She is making some gains with the limited rehabilitation and other efforts I have been able to provide.  Her potential for significant improvement is good if her nutritional requirements, medications, and treatments are maintained, and intensive therapeutic interventions are performed, soon.  The United States Surgeon General makes this abundantly clear in his statement on autism.

In order to give K all of the help that she needs on a daily basis, and keep her in our home, I need help. K's diet, supplement, and prescription regimen needs to be maintained, to ensure she is medically and physically able to develop cognitively, socially and lingually.  Additionally, her hypotonia and ataxia need to be addressed through chiropractic care and therapeutic massage; so she can ambulate like her peers and participate fully in school day activities.  I am certain that, with just two years of full support services to: assist with personal care and help develop habilitation skills; intensely modify her behavior; address occupational, physical, and speech deficits to help her gain age-appropriate skills, and train her in basic living and social skills, K will be able to participate in a mainstream Kindergarten classroom (and beyond), with minimal supports.  With the help of her family, K can grow up to be a capable, productive, and self-sufficient member of society, and contributor to the Florida economy.

Without these services, K’s future looks dim, her undertreated, severe autism will ultimately result in her placement into a State institution (I am not capable of handling a large, violent, and uncontrollable child and her sister’s welfare must be maintained).  She might be lucky enough to learn a skill in a sheltered workshop, but like most severely autistic individuals, she would have to live out her life in an institution or group home, as a burden to the state.

I do my best to provide the medical, emotional and therapeutic modalities for K, so that hopefully one day she will become self-sufficient.  Right now however, K is in danger of hurting herself and her sister.  She requires constant, direct supervision.  She desperately needs to participate in an intensive ABA program, to learn the skills that typical children naturally develop.  She needs to be fed and supported, daily. To meet her potential, K requires multiple developmental services to meet her many developmental needs - NOW.

I am struggling so hard to meet every one of K’s needs now because I see in her the ability to overcome a large portion of the symptoms her disabilities cause.  With the right interventions, now (substantial intervention, birth to 5, yields the best recovery outcomes), I believe she will need few supports beyond elementary school.  In the last eighteen months, K has progressed, globally, farther than anyone ever fathomed she could.

I thank God, daily, for K's the marginal successes.  Without the therapeutic diet, dietary supplements, infusion therapy, prescription drugs, other food supplements, and nominal therapies, I am certain I would have already lost hope for her recovery.  I have given my children all that I have and all that I am, and I have mortgaged my future to help ensure that they will have one; I have nothing left, and they need so much more. I continue to have faith that all that I have done to help prepare K to be able to learn and develop is not in vain – please help to make my faith a reality.  Please invest in the support services today that will ensure her self-sufficiency in her adulthood.  Ultimately, I implore you to save the State millions by spending thousands, now.

I know that you are committed to the disabled Floridians and their families.  Please contact the Florida Department of Disabilities and urge them to approve the necessary funding to keep K at home.  I beg you to help keep my family intact by providing the services K so desperately needs.

Thank you for your time and support,

L Pa


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