Sunday, January 21, 2024

Navigating Life...or the GPS of Accommodations and Services... Be an Advocacy Hero...

Whether you are an adult of an ACCer or you are an adult ACCer yourself, you would surely recognize how difficult it is to navigate the world of services and accommodations that we need in order to thrive.

This is no less true for me.  I'm 53 years old, and for most of my life now, have fought (falteringly) to get even my basic needs met.  I collect disability, which is less than $800 a month, so I cannot pay for things that people even find most basic.  Furthermore, the Social Security Administration designs it so that those who are disabled remain ensconced in poverty.  If you collect SSI you may not have more than $2000 in total assets of any kind.  You cannot save money in case of an emergency, or for any other reason.

The laws that govern SSDI also make it nearly impossible for someone to return to work.  Sure they have the "ticket to work" program, but it is complicated and designed ONLY for those going back to work that they can fully sustain themselves on.  The laws governing SSDI are so complex, so controverted that one cannot even have a small supplemental income without endangering both their monetary and medical benefits

And this is only part of the issue...

For those of us who have no choice but to try and survive on disability, accessing related services to improve our quality of life is very difficult.  Again, there are services out there, but if one is lacking in executive function, cognitive skills, social skills and a law degree many of them are difficult if not impossible in some States to access.

I think (from personal experience) this is especially true for those of us that are misleadingly labeled as "high-functioning." The trouble with that monicker is that it really describes NOTHING.  Sure, I can drive, feed myself, bathe, brush my teeth, I can walk and talk....yet the most basic of these skills (with me, for example) are inconsistent at best, and without prompting I have difficulty remembering my own ADLs.  The mental power, social skills, and finesse that it takes to navigate agencies for services, is something WAY beyond my own personal capability.

Due to this, I (personally) have gone without, for the majority of my adult life...I have languished, failed to thrive, felt defeated and dejected even trying.  It was only a major life crisis when an individual took advantage of me (another post to write about, ACC, ASD and social naivete) forcing me and my service dogs to become homeless, that Adult Protective Services finally stepped in, observing that I am indeed a vulnerable adult.  Once on the radar of APS, they worked tirelessly to arrange to have my basic needs met.  Because of this, I am able to begin to relax and not be in a constant panic mode as to where I am going to live, how I am going to take care of myself.  They have arranged for me to get In Home Support Services to help me with my ADLs.

I also, in recent times, have another advocate in my life, let's call her "L."  She excels in areas that I

simply fall short in; having both the patience and the knowledge and skills to navigate this difficult landscape.  She has worked tirelessly to make sure my needs are being met, and to make those who have taken advantage of me and hurt me to answer to the law and justice.  These are things I simply cannot do on my own.

While I'm not quite "there" yet, all of the events leading up to today have set me up to be in a position to begin to thrive, for the first time in many years.

I know many others with ACC and ASD....Especially adults with ACC that are diagnosed later in life, we have suffered the school of hard knocks (many of us), because we lacked the knowledge and support to get along in life.  Our parents, friends, caregivers, etc....not knowing about our condition simply did not and could not have the skills and means to help us, or often not even the desire to help us.  Many adults with ACC I have met have very strained relationships (or like in my case, NONE at all) with their families.  This is usually because of late diagnoses, after years, even decades of life not knowing why we were so different.  In my case, my own father calls me a "psychopathic liar", "lazy", "unlawful", "immoral" and worse.  The man carries far too much shame to admit he was wrong about me, and I haven't really spoken to him for many decades.

If you are a parent of an ACCer and/or ASDer, be your child's champion, they need your help and assistance.  Parents, long before your child get to "legal age" it is extremely important to begin to navigate the system and to set up supports they will need to thrive. Do not put it off.  If I had had an advocate in my 20s as I do today, even without having my complete diagnoses my life would look very different.

If you are an adult friend or spouse of an ACCer or ASDer, and you see them stumbling all the time, ask yourself if you might have what is needed to be that person's advocate, to fight for them, work for them, help them thrive.  If you dig deeper, you may find that person is not quite as able to cope and function as they might want to put on.  I know I myself had far too much pride (strange considering my horrible self-esteem in those years) to ask for help, and frankly didn't know HOW to ask...YOU might just be that person's hero.

~Joseph Galbraith

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