by, Renee Wood

I do much I guess, but much of the time I don’t see the fruits for my efforts – I mean I have received more advocacy awards than I probably deserve, so I know people recognize I am doing something that makes a difference – I just can’t see what I have done myself.  Every once in a while though, I get to see an end result of something I started.  I didn’t do these things myself, but I planted the seed, cultivated it, and allowed others to see it through to fruition, while remaining available if there should be issues in getting it done.

Individual advocacy is not what I do much of, not for any particular reason, but I just chose to put my efforts into systems advocacy.  If one can help change a system, in theory at least, it serves to help a lot more people than just 1 person at a time.  Every once in a while I meet someone from my past who is “stuck”, either in an institution, a home (with a parent), or a group home that they don’t need to be in.  Boy, and the lies systems tell to keep people ignorant of their rights, and of the services that are out there for them to live in the community.  These institutions would rather collect money on these cash cows.  These cash cows are very capable but need some physical assistance!  Today was the culmination of a year and a half process that started September 27, 2020 with a brief message on FB Messenger to me that read; “I am willing to do whatever it takes to get back out on my own”.

Debbie was 59 years old then, and had been in a nursing home 10 years.  I’ve known Debbie since grade school, and in our 20’s we spent much time together doing recreation at The Ability Center.  Debbie moved out of her parent’s home when she was 20 years old, back in the day when accessible units were plentiful (because affordable, accessible housing units were a new thing then, and usually people with disabilities lived with their parents forever), there was no “home care”, and County Boards of DD were not for people like us.  We found ingenious ways to do our own care.  Debbie used a wheelchair her whole life and had a twin brother who also had CP, more severe than Debbie’s, and he also had a cognitive disability – Debbie does not.  Although her brother was in the DD system, as many like us during that time, Debbie never sought services – not even a Medicaid Waiver when they became available in the late 80’s.  For Debbie to get herself out of bed, showered and dressed, it took 3 to 5 hours.  It took me 1.5 when I was in my 20’s early 30’s, and 2 hours or more after I was older – although I did get a Waiver in the ‘95, and gave it up in 2000 when I was gainfully employed (no Medicaid Buy-in for Workers with Disabilities then).  Doing our own self-care was just routine for us – there was no thought about how long it took us or how much energy it took – we were out on our own and proud of it.

By the time you’re in you 40’s your body is spent.  You’ve been like an athlete doing things that you should have had some assistance with all along.  None of us regret spending our bodies like that because it was real freedom!  Debbie in her mid-40’s was struggling a lot doing her own care.  It came to a point she needed rehab to recover from an injury caused by struggling to do her care herself.  The “plan” she said was to recover and go home.  Well during rehab, she lost her ability to transfer herself. They then said anyone who can’t transfer, can’t live alone and placed her in a nursing home.  Not knowing any better she took their word for it.  No one talked with her about Home Choice or Waiver services.  Although she had moderate CP, it was assumed by the social worker, since Debbie lived independently her whole life up to that point, she wouldn’t qualify for DD services.  The Ohio Home Care Waiver probably wasn’t considered because it didn’t provide 24/7 care, not that she needs 24/7, but from the nursing home perspective, she does (not that nursing homes, or any other institutional facility, truly gives 24/7 care – a body on the premises does not equate to “care” in my definition).  As Debbie humorously puts it, the nursing home just couldn’t conceive she had ever lived alone.

Debbie and I lost touch over the years, so I didn’t know that she was in a nursing home – and especially to find out how long she had been there, reported to me by a mutual friend, who also told me the circumstances under which it happened.  Ten years is a long time and people can accept any circumstance when not given a choice – they become mentally institutionalized – start to doubt their competence, loose the abilities they once had, and just start to except this as ”their new normal”.  It’s actually sad to see someone who strove their whole life to live independently, and after saving the State hundreds of thousands of dollars over the years by not enrolling in a Waiver when they were young (which they genuinely needed some assistance all along), have to be institutionalized because they were not on anyone’s “radar screen” as needing services – so wasn’t recognized as “disabled” until they just couldn’t do it no more.  No one wants them now – like a “punishment” for being uncharacteristically independent for someone who has moderate CP.

Anyway, I didn’t know what I would find, but Debbie always had “spunk”, so I hoped she had not given up all hope of ever being on her own again.  Previously, I helped two other women with CP escape – both older – in mid-50’s, County Board was involved with one, but she still had the Ohio Home Care Waiver, although her CP was always severe, but cognitively smart – and I mean smart – and a smart-ass as well.  She had been independent since her 20’s, married/divorced and worked.  She was now in an unsafe situation that the County Board was dragging their feet on (for four years – she’d call me distraught and sometimes crying stuck upstairs with no way to get down for weeks) and she just needed someone to help them realize, someone other than herself, knew what was going on and if something horrible happen, she (I) was going to write the media and sue.

The other woman was never on ANY services, not even Medicaid, until both parents passed.  Her brother was barely caring for her and ready to place her in a nursing home, when the County Board got notice.  She was older than me but I knew her from Feilbach school, and I was reacquainted with her through a SASS (who probably regretted the introduction at the time).  She used a manual wheelchair that was oversized and she could barely move in it.  Again, the County Board had their own agenda and timeframe.  She wanted her own apartment with help coming in throughout the day – she got a Waiver Home with 3 people with cognitive disabilities, whereas she was college educated – what the hell were they thinking – so we went to work and got her into her own apartment in record time – 3 months!

Since I’ve done this successfully, I know what it takes:

Time:

Building relationship and trust with the individual.  They have to open up and genuinely trust you with their personal vision for their life.  This comes out gradually in layers and can take a couple months of communicating regular – up to 5 hours a week in some cases, others can be as little as an hour every 2 weeks – with the understanding that they can call when they feel the need.  Sometimes they are given bad information (I think to purposely discourage and break their resolve) and need someone who is on their side to process it with.  You can still be working on their issue – it’s not a linear process.  They need someone to honestly talk it through with who will always have a plan B and C to get around the system when shit flies.  Communication continues not only until the desired outcome is met, but even for a time after because problems will arise in their ideal situation.  Communication naturally drifts off, but they know you are there if they need you.

Commitment:

This goes both ways – we see it through together.  No matter how long it takes we have to be committed, even threw discouraging setbacks, disappointments and fighting an uphill battle – we don’t quit until we see this through.

Trust:

Again, this goes both ways, and is earned, hence why we spend time together.  You may not always like what I say, I may not always see it your way, but we have to trust each other.  A good example, the one woman who lived with her parents all her life, thought she didn’t need anyone to come in to help her.  I never say, yes or no, when I think someone is mistaken, I ask questions.  “Ok, how are you going to put your pants on”?  I knew she could dress her top half, but not so sure about the bottom.  I go on, thinking a good reality check here, “And your brother says you can’t wash your hair”.  She raises both arms over her head and clasps her hands together with no problem what-so-ever!  She did not say a word, but did it with an aurora of defiance – they were lying about her abilities.  Yes, she needed assistance with the bottom half, but once pants were over her feet, she could pull them up.  This meant she could toilet herself in an accessible bathroom.  As well as shower herself (which she learned at my house), her parent’s home didn’t have an accessible bathroom.  We both learned something by trusting each other enough to listen.

Defiance or “Spunk” or Courage (whichever you prefer):

If someone caves to the system, I can’t take them on because they have to want it so bad that they will fight!  It doesn’t matter their knowledge of the system, or the lies they’ve succumbed to, that’s not their fault, so I can work with that, but they have to trust me – not the system.  They have to “use” the system, but when there’s a discrepancy, I will trust what they were told, but if I say the system deceive them, and here’s the Rule, they have to trust me.

I have to hear in their voice though, something like, “Although this is what I’ve been told, and I guess I have to accept it – it ain’t right”!  Sometimes it comes out in sarcasm like, “They expect me to be grateful for this pile of shit”!  Even if they “act” grateful in the presence of those that could make their life miserable if they acted otherwise, I have to know something is boiling in them that will make them fight, knowing someone’s fighting with them.  It gets tough, and you have to plan behind the powers that rule your life for now.  You have to trust the strategy, hold your cards close and play them one by one at the right time.  Use the system to help get what you want, but play your cards at the right time.  Do whatever it takes to keep that fire in your gut because that is what will keep you going.  Call it hope, righteous indignation, or pissed off and ain’t going to take it anymore, but you have to stoke it even when bushels of water are being poured on it to put it out.  One can be angry, and in some cases say why, but don’t act in anger!  Follow the strategy.  The strategy may need to be tailored from time to time, but trust it.  If they see your anger they will defeat you with it.  No one’s perfect, if you lose your cool once, that’s ok, just know you can’t win a battle fighting with anger – knowledge is power and that’s the cards you hold close, don’t let them see what you know until the time is right to use it.

Debbie had not lost her spunk, but was kept from the knowledge of what could help her get back to the life she once knew.  It was a year and a half to get her out during the time of COVID (which she got in the nursing home, and that delayed the process), plus the workforce crisis, but it happened.  I told her no matter what I could get her out, but we had to get a Waiver first.  I explained the DD Waivers were best in the sense of obligation of care, whereas Ohio Home Care Waiver could leave you in bed for days and no one would know and probably not really care. 

There was no doubt in my mind with the level of limitations her CP had had on her day to day life, qualifying for DD services shouldn’t be an issue – wrong!  At age 22, I was far more functional than Debbie at 22.  First, I could walk – and I mean walk all over campus with 20 lbs book bag on my back.  Self-care took me some time, but compared to what Debbie had to go through to manage to do her self-care – mine was a breeze!  It only stood to reason in my mind, if I qualified for DD services at age 42 after an operation due to the long-term effects CP had on my body, struggling to do everything on my own all those years, Debbie would naturally qualify too.

Explaining the OEDI to someone who viewed themselves as independent all their life, is like robbing them of the dignity and self-image they once had of themselves.  It forces them to focus on the hardship of caring for themselves all those years ago.  If the average person would have seen what it took for Debbie to get in and out of the tub and dressed – it would be viewed as extreme, but to Debbie’s view, it was not a problem.  This is so not the right assessment tool for a CP in their 50’s trying to assess what they could do before age 22.  The time and energy it took to preform daily tasks might be recalled if the assessor specifically asks, but if the person being assessed is not forced to recall the time, energy and natural supports that helped them through the years, then you’re going to get answers that says they were completely self-sufficient before the age of 22 – which, in a sense was true, but doesn’t give a clear picture of what that actually “looked” like a daily basis – survival doesn’t look the same as a life with supports where necessary.  One doesn’t want to give support if the individual is willing and wanting to do it themselves, but it can be noted that supports could be beneficial, so when the individual has worn their body out with struggling, supports can be given without an assessment of abilities before 22, assuming they have a qualifying disability such as a wheelchair user with CP.

All that to say, Debbie was denied DD services, but we appealed and she was approved.  I have to give much credit to a social worker Debbie befriended in the nursing home.  Without her assistance in keeping up with paperwork, following up with County Board workers, and assisting with the appeals process, this would have been more difficult and possibly taken much longer.  Somehow this social worker just knew that Debbie had no real need to be in a nursing home, other than the need for activities of daily living (bathing, dressing, toileting, transfers, etc.), and that Debbie’s life was being wasted – much kudos goes to her for believing in Debbie and standing with her through this ordeal of breaking out!

Credit also goes to the Lucas Co Board of DD, because once she was qualified for services, they secured housing, supports, providers, and I imagine, funding to setup a household for 2 women who were locked away for years and had nothing for a home – beds, furniture, linens, toiletries, small appliances, pots, pans, dishes – you name it and they probably needed it.  It takes a caring village to help someone escape from a place they didn’t ask for, and didn’t need to be.  I was honored to be a small part – just the whisper in the ear that reminds you; “Yes you can”!

Debbie is living with a roommate with CP, who is almost 70 years old, and was also held in a nursing home for 8 years.  At their age, they both still have dreams and goals for their lives in the community.  Wish them luck on this new journey.