Who Wouldn't Choose Independence?

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic


The year is 2018. The insanity is, the State of Florida demanding a letter explaining why my adult daughter wishes to receive the services & supports necessary for her to achieve self-sufficiency.
Really?! Who WOULDN'T want a self-directed, capable, independent life? Does anyone actually choose to be locked into an institution and disregarded for the remainder of their lives?

Submitted: July 07, 2018

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Submitted: July 07, 2018

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To whom it may concern –

I was asked to write a letter about what Independent Living means to K. I was surprised to have received this request, as it seems to me, the far larger question would be, “Who wouldn’t wish to have an Independent and full life?”

From the moment of K’s diagnosis, K’s family has worked to prevent K’s disability from becoming a life-long sentence to an institutional life. K was two years old, when the Developmental Pediatrician declared K was “Severely Autistic,” he advised K “will never speak with intent or toilet train,” and that she would “never be capable of a job as simple as bagging groceries at Publix,” finally, he advised we “put her on a waiting list for an institution, because she will require this level of support, for the rest of her life, by age 5.” From this appointment, forward, no effort has been spared, as K’s family has sought to assure K has a path forward that hopes and strives for her best possible outcome, while planning for the worst. 

As part of planning for the worst, we must consider that K has the misfortune of being adopted by older parents; if my parents are the template, I have between 12 and 14 years left on this earth. This moment in time finds K nearly 19 years old. Thanks to over 18,000 hours of 1:1 applied behavioral analysis therapy, nearly two decades of 40+ prescribed daily supplements with a multi-allergen-free densely nutritious diet, and working every waking moment with every person in her life acting as therapist, K has overcome the highest hurdles the Developmental Pediatrician declared impossible for her to surmount – she has functional language, and uses the toilet appropriately. With great effort, K has surpassed the low expectations of a number of doctors and the School District IEP teams– K WANTS to break through the limitations her diagnosis imposes; she invests nearly every waking moment into doing better, learning more, and trying to make it to “typical.” Frankly, K NEEDS to attain something approximating “typical –“ nobody can live on a budget of $700/month (SSI) safely, healthfully, and independently. While K can count on her parents to help, while we are alive – what happens when we die? Will minimum wage people provide her the elements she requires to stay safe, healthy, functional, and engaged in the world outside of her head?

Independent living means K will have a meaningful role in the local community, her life will be an expression of HER views and aspirations, not an afterthought of institutional programming. It means K will have the opportunity find peers and a community that welcomes her, while having the capability to understand with whom she is safe and protected. Independent living, for K, will likely mean supported Independent living, so that K can have the right supports to allow her to go where she would like in the community, participate in her community, recreate healthfully, and find and maintain employment that is, not just, meaningful, but also independence-sustaining.

Although K has come a very long way, from her day of diagnosis, K faces a long road studded with hurdles, to achieve the level of Independent Living to which K aspires. K’s diagnosis’ will affect her differently throughout her life. Right now, she faces the mundane (but none-the-less difficult for K) hurdles of development and those additional hurdles imposed by her diagnosis’ and disability (continuing to develop skills in self-care, personal safety, meal planning, shopping, meal preparation, supplement preparation, supplement inventory, supplement ordering, eating appropriate amounts/pill taking, homemaking, safe navigation within the community, etc.). Later, K will need help navigating the larger world and the changes faced by every “typical” adult - big life changes such as the transition from high school, which takes place next month as she graduates with an official diploma, and starting down the path toward higher education at college.  Eventually, K needs to be prepared for the loss of her loved ones to death, and the many expected (and unexpected) changes a fully-lived life will bring.

Right now, and for the foreseeable future, K has and will have significant challenges, including learning disability and behavioral challenges driven by her epilepsy, autism, autoimmunity to her brain endothelium and myelin, and hippocampal sclerosis; she is also impacted by her metabolic and GI issues and allergies which, additionally, impact K’s physical stamina and ability to digest. Throughout the day, K’s behavior can be very challenging; this is another area where she has the need to develop self-mastery – her family and therapists use a special diet and supplements along with a planned, incremental behavioral approach to help K arrange her day to avoid the difficulty of unexpected transition, as well as to approach all tasks of on-going learning in school and in life. Left to her own devices, K chooses her internal fantasy world, to the exclusion of the world around her – one example of this is that K will wander to the middle of the road to dance, sing, and act-out imaginary fight scenes with gusto and wild gesticulation. Without supervision, K could easily end up misunderstood by the community, and in a dangerous situation with the police.

 

Supported Independent Living means that K will have the opportunity develop the full set of skills she needs to achieve independence, to the best of her ability. K wants and deserves the same opportunities as everyone else. She has worked hard to overcome many hurdles, and should have the continued opportunity to grow and enhance her skills. K should be permitted the wrap-around services and opportunities to empower her to be as independent as possible.

According to K, that life, in the near future is the following: K wants to begin a volunteer opportunity at the Brevard Zoo, continue to develop her independent living skills in her apartment with her family nearby, attempt a general Associate degree with an emphasis in Statistics, then work toward a Bachelor degree in Statistics, at which time, she wants to move away to her own apartment to attend the 4-year Statistics degree program at UCF, then seek independence-sustaining employment. To accomplish this series of goals, K understands she will need an intensive and well-thought-out plan and significant help and support. A plan like this would represent a five-year plan for a typical person – for K, this is likely a ten-to-twelve-year plan. But, undertaken with intention, forethought, and patience, we believe K is capable of achieving her goals.

Much has changed since K turned 18. K has moved into her own apartment. K is two classes away from achieving her high school diploma. K has completed her volunteer orientation at the Brevard Zoo. K has set up a plan with Vocational Rehabilitation. K has put in-place her Ticket-to-Work plan. K’s Waiver Support Coordinator has submitted a SAN and plan that can help K to continue to develop her independent living skill set. K is requesting the State of Florida (APD) to provide her independent living supports and individualized accommodation in her new apartment. K, her family, her physicians, therapists, tutors, and K’s Waiver Support Coordinator are working together as a circle of support to drive the process of identifying K’s needs and aspirations, making choices about how to support K in pursuit of achieving the life she desires. Services, including transportation, home and personal care, leisure activities, education, housing, health and employment must effectively combine for K to succeed in accomplishing her lofty goals.

 

Over the past fifteen years, we have come to the State with requests for support for K. Again and again, we are put-off, declined, postponed, and bait-and-switched. As K’s parent, I am hoping that this time, K’s needs will be recognized, her strengths will be considered, and the State will conclude that providing K the supports she needs now will be a valuable investment which will yield one less adult with Autism on the dole for life, and one more adult with Autism living competently and safely as a tax-paying citizen. K has worked incredibly hard, every day, for the last sixteen-plus years to attain “typical;” she has come so far – why wouldn’t she want to fully realize the goals for which she has worked for so long? Who would willingly choose a life of dependence, disability and accommodation, if they could choose a life of independence, ability and capability?

If you made it to this point, thank you for your interest in why K would like to have independent and supported living services in her apartment.

Kindest regards,

Liz P

On behalf of K P and her family


© Copyright 2018 LizP. All rights reserved.

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