We have worked for years with disabled people caught up in big systems, like jails, prisons, nursing homes or other large facilities.  A colleague recently taught me to define an institution as a place where, if you want one, you can’t get a burrito at 3 A.M.  Having zero control over wants and sometimes needs defines institutional living.  Most of us cannot imagine living like that, let alone doing so because of a developmental disability.  It is a very painful way to exist, yet it’s happening every day.

Advocates face one maddening issue when fighting against institutionalization – the lack of childhood records.  If we can find them, they may not contain accurate diagnoses.  Getting the right diagnosis depends heavily on good educators, capable guardians, decent doctors, and people brave enough to ask the questions Necessary to fight for a person’s right to be seen for who they really are.  Having something like a “learning disability” diagnosis may be accurate, but digging a bit deeper can sometimes paint a better picture, securing services and needs across the lifespan. Poor or missing childhood records are keeping innumerable people behind bars or in other institutions today. As you read this, many are being punished for their disabilities in places not meant to help them.  It is deeply unjust having zero control over one’s life based on missing documents, poor evaluations, or a lifetime of inadequate medical care.

 

The Diagnostic and Statistical Manual (DSM V now) is a way for professionals to talk with each other about groups of characteristics someone might have.  These often add up to a “label”, but there should be no stigma or shame with a diagnosis.  I’m nearsighted, anxious, and sometimes have insomnia – big deal. Maybe you have diabetes, Tourette syndrome, depression, autism, or an intellectual disability.  We need to all just be people with differences who help meet each others’ needs with kindness and equity, labels and all.  It is okay to get and keep a diagnosis which may help get needs met in far better places than jail or a nursing home.

So here is my plea – if you suspect someone has a childhood disability, please do anything you can to get a solid evaluation.  Yes, family members may challenge you.  Your doctor may challenge you.  You may challenge yourself!  If you’re an educator, parents may get mad at you for pushing to get a deeper look.  We owe it to kids to be brave enough to defeat stigma and fear to get them the help they may need for a lifetime.  So, make a record, get things on paper and preserve evaluations and reports digitally.  Make copies and put these somewhere safe.  Perhaps the person will just live their life and be totally independent, or be fortunate to get the right help if needed.   But please create and save a factual record of childhood diagnosis as if that person’s life depends on it, because some day, it literally might.

Accurate records determine services, funding, income, food security, living arrangements, and medical care – some really significant things.  Basic paperwork is often critical to what happens after police get involved and file charges about anything. Loitering, trespassing, having a fight or flight response, being pulled over driving, doing a “favor” for someone with secret criminal intent – proving a lifelong disability is a crucial piece of defending these kinds of situations we do not see coming.  The justice system does not “take your word for it.”  You must have documentation to help direct a case in the right and most humane direction.  If you’re living at home until late adulthood and you suddenly need help, you will absolutely need childhood records to get it as you age.  Yes, I am repeating myself, because too many lives are ruined by lacking these simple things – papers! – which we might take for granted.

One last soapbox moment – the system needs to make accommodations for disabled people who were raised in complete neglect, when guardians or parents may have never sought medical care, or threw away records if they had them.  Regulators need to change the arbitrary rules to give adults with current disabilities of intellectual disability or autism, double points for absence of records for reasons of childhood neglect. Currently, it denies help for the most vulnerable who have often suffered a lifetime of poor care, and it punishes them for this experience by withholding supports, services, and freedom to live in the community.

It’s okay to have a disability if that’s what nature has decided – it’s a fact of life.  We record videos and photos and save those memories of good times.  We need to identify, document, and save disability records as well.  Everyone needs something – and when those needs are disability related, it’s up to all of us to make sure it’s okay to call things what they are, preserve the evidence, and then to assure freedom and care with the right kind of help as needed, for a lifetime.