Commitment, Disability Awareness & Advocacy, Life, Uncategorized

Adversity, Growing Pains & the Hope of a New Life

When your adult child with a disability “grows up”…. meaning they are no longer a minor child, life changes. Sometimes in a big way. Time marches on. Their needs change – in so many ways, it’s difficult to keep up with!

Along with that change, I’ve learned that the various “systems” that support them (and myself as a parent), are seriously and fundamentally lacking.

Let’s talk about the elephant in the room. We as parents are getting older and we wonder, what’s going to happen to our children when we’re no longer around to either take care of them or advocate on their behalf? What will their lives be like, we wonder. Will they be deprived, neglected or abused? Will they be safe, healthy, happy and engaged and included within their community? These questions and thoughts keep me up at night – and truthfully have been with me every waking moment of his life, since birth. I know that I’m not alone, as a parent. Hello. Nice to meet you!

Suddenly life evolves, transcends or parts of that former life that existed in supports and services, simply deteriorate or disappear altogether in many areas – educational, social, mental, the physical, medical, financial, etc., (and not for the better, especially for those parents who have a child who is more severely or multiply-involved).

I’ve become overwhelmed lately in trying to figure out how best to prioritize and handle life on Max’s behalf – so it’s entirely about HIS life the way HE wants it. It’s quite frankly, daunting.

My brain literally wants to walk away and turn off – just for a little bit. Just long enough to re-charge and have quiet time to think this all through. Time is the problem here.

I’m so tired of repeating the same stories (his life story and various issues) over and over again to different people in different places, to get supports and services; to make what I consider to be necessary changes. Some people listen sympathetically. That’s good, right?

Well why do I have to keep telling the same story over and over? My God, it’s like Max and I live in an endless loop.

If I never had to talk to another person about his life (to get services/supports), and others did what they’re suppose to do, he would have a more meaningful, engaging and all-around better life, and hell, I’d have a life too. Peace might reign.

Well, that’s not going to happen where Max lives now. It sucks – unnecessarily so and it pisses me off. It doesn’t have to be that way and sometimes, I’m not nice. Too bad. Max is human and so am I. So…

Some good news in all of this, is that Max now has a remarkable, magical communication device based on eye-glance (Dynavox Tobii), and it’s being set up and programmed for him. It will be a life-journey, but I’m very happy for him to begin that. It’s hopeful that one day, he will be able to have his own voice in which he can speak his preferences, wants, needs, desires and dreams. This may be his ticket out of his current, sad living environment.

I can guarantee he NEVER would have gotten this device if I wasn’t the one that went after it. They would have still been just “looking at him looking” (no, I’m not kidding) and reaching for food or a drink, etc. But wait! I’m looking at them looking at Max. I see everything.

I imagine (too much and agonize over the fact) that there are many nonverbal people (with complex communication needs) out there who could communicate quite clearly what they want if they were given the opportunity, devices, training and patience to do so.

I have to fight for everything where Max lives now. Literally everything. He is living in a group home where no one responsible to support him, understands his emotional needs – those related to Self-Determination or community inclusion.

At his group home and local CMH, they continue to believe that ANYONE who is disabled, especially developmentally-disabled (no matter their age) is a “peer”, even if they’re old enough to be an aunt, uncle or grandparent. And there is absolutely NO opportunity or activities that put Max in touch with any non-disabled people in his age group. Slap my forehead.

They can’t comprehend his physical and medical needs, either current or in the future (there is no anticipation) of anything. They appear to not care at all. I don’t know if it’s out of ignorance or laziness or greed, because I have tried to educate them time and time again.

I constantly feel like I’m spinning my wheels, and while I’m talking to these people who could and should be making a difference, some aren’t listening at all or others have it down to nodding their heads sympathetically, while doing nothing.

Time, as we all know it, is running out for Max. He’s now existing in a very lonely, stagnant world. It’s bleak. It’s wrong. No one else locally or at the state or federal level is checking in. No one has reached out to me, ever. I have to do the reaching out and the follow up – consistently.

So am I wrong to feel at least a little bit upset by this betrayal of his very being? I think not.

He’s not in school anymore. He aged out at 26. In school they had lots of activities, including going out into the community. They’d take bottles back to the store for return, and go shopping for supplies for art projects. They’d volunteer and go to the Humane Society. They’d go out to eat at a restaurant. They’d work in their garden in the Spring/Summer.

They worked on academics and were given opportunities all the time to communicate in many different ways.

He’d be stretched out (given range of motion), and his leg braces would be put on according to the schedule that was set by the physical therapists. He’d be up in his sit-to-stand device – which would help to improve his digestion, circulation and bone density/strength. He’d be up standing tall. He had a teacher and staff who worked with him diligently, and cared about engaging him and working with him on fine-motor activities and communication. They’d notify me when his equipment had issues or something wasn’t going on right with him. If he was ill or if there was even a scratch. He doesn’t have that anymore. He doesn’t have the friends that he had at school either. Poof. Gone.

I’m not going to say that school was perfect. It wasn’t and I would even say that there was a certain amount of “seclusion” within the community at-large – but in a very rural community, this was most certainly better than sitting in front of a tv while laying in bed watching Paddington Bear for the 10th time (or staring out the window), while someone yelled they had to go to the bathroom – with the only hope of getting out during the week being those trips in the accessible van to the dentist or the doctor’s – or to the podiatrist to get your toe nails clipped and then running through the McDonald’s drive-thru.

There are some parents who understand exactly what I’m talking about and we’re “one” in that regard and not alone. We’re an unfortunate and sad “tribe”.

I understood, early on when Max was very young, about people who get “jobs” in the “social service” fields; those who do advocacy work. They go out and give presentations or do work shops, and help to represent children and adults with disabilities and their families. They advise. Sometimes they have children with a disability or disabilities – or maybe other family members. I learned that this can have its pros and cons.

As I’ve reached the age that I have, I’ve seen some “forget” what started them on that path. They become de-sensitized (I’m sure they’d argue against that – but eh, I’ve a right to my opinion).

Come on, let’s be honest. It happens. It’s called burn-out or “I stopped giving a fuck because everyone else stopped giving a fuck”. I refuse to buy into that bullshit. Don’t get me started on the lack of funding crap either. There ARE answers out there, if people are creative and innovative enough.

So instead of supporting and defending parents and families and individuals with disabilities, they take issue (offense) with any criticisms I have of the systems within which they work or about their associates?

That says a lot and it’s not good. When someone tries to make ME feel BAD for standing up for myself and my kid; for pointing out systemic breakdowns that hurt my kid, I take offense.

I’m hearing lately that everyone is “too busy”.

Sorry.

No, not sorry.

I care that those in a position (and who receive a salary) think it’s “okay” to use that excuse. That attitude directly affects my son’s quality of life and I’ll say it, his very life.

Cry me a river over the “too busy” bullshit. So suck it up buttercup. I’m not going away. I owe Max much better than that. I’m better than that. And they should be too.

This attitude has given me pause recently to re-think my position as Max’s parent, guardian and advocate, and how effective or ineffective I’ve been these past few years. And to think about EXACTLY what are the roadblocks in his life in getting him what he needs.

Do I need to change my “direction”? Do I need to re-assess which people or nonprofits, organizations, agencies, departments – either state or federal are worth my time or Max’s time in approaching? Am I wasting my time? Are there particular grass-root movements where Max would be better-served when it comes to my time and energy?

Obviously, changes need to happen. I believe that socially aware and involved people need to get together and have brainstorming sessions. We need to come together in making those changes. Everyone involved in the area of ALL the disabled. Too often, the most severely, multiply-disabled are left out of some very important discussions. Why? That should be obvious. They nor their parents or family can “make it” to the many meetings that happen at a distance from their homes, as they struggle to take care of their child or family member. They’re too busy just trying to survive.

Here’s one. How about instead of the Michigan Department of Health and Human Services/CMH’s hiring more fresh-out-of-college, inexperienced, incompetent social workers (who have absolutely no fucking idea of what’s suppose to be going on), they hire some activity directors to make those very much needed community connections (concentration on inclusion), into oh-my-god, meaningful and fun DAILY interactions? There. See? Was that so hard?

Start thinking outside the box people.

How about THROUGH the State of Michigan, MDHHS, the CMH’s, Intermediate School Systems, and other advocacy organizations, together, figure a way to REACH out to EVERY person with a disability and their family members – to make sure that THEY’RE meeting EVERYONE’S needs; to LISTEN; to really hear ideas, suggestions, comments? Btw, not everyone has or can afford to be connected via the internet or has a computer. Think that they can get to a library? Think again.

Thinking about HIPA and Privacy issues?

I’ll sign a release of information for them to contact me if that’s what it takes – you know, because privacy issues should continue to keep myself and Max (and others) in the dark and unsupported? Wow. Just wow. SMH.

Let’s do better…. as human beings. Be mindful. The sky’s the limit.

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Disability Awareness & Advocacy, Uncategorized

Disabled and Poor – You Are Now Entering the Twilight Zone

Usually being disabled means that you are also poor. I think that we’ve already established this before, but it bears repeating. Originally, I wanted to sub-title this blog, “Living Poor and Disabled in a F*cked Up World”… but didn’t. It’s still a relevant statement.

Case in point, is the following article that I came across, of a young woman who is disabled and requires personal care, among other supports and services. She is being forced to remain poor (having no choice) so that she can receive the necessary services and supports through Medicaid that she must have in order to receive personal care, mobility, an education, keep her home maintained and to travel for work. You know…. live a normal life like everyone else.

If she makes a little bit too much money, she will lose her Medicaid – so she can’t move ahead in her life. It’s a Catch-22 and it’s a huge obstruction in the life of someone who wants a better life. Shouldn’t we want that for each other?

Yet that “choice” (which probably should be called a nonchoice) does not allow her to live the full and purposeful life that she could and should be living – the kind of life she desires to choose for herself. She is being denied a self-determined life, which is a human right.

Many, many people with disabilities have to live “non-lives” for many reasons. It could be lack of funding (a common excuse that I hear about way too much when it comes to community mental health or health and human services, etc.). Oh-oh-oh, here’s another one – “We don’t have a program that covers that”.

Some people are denied medical benefits outright, as in if you’re a few dollars “over-income” – or some disabled people have to end up paying a high deductible or co-pay. This is a problem when their income isn’t actually steady.

There are just so many ways to hurt people and keep them down.

A lot of people receive less in the way of supports and services than what they need to have a good quality of life – let alone maybe…. just maybe make the world a better place, if they were truly supported.

Let’s add to this list.

There is a lack of qualified personal care assistants “out there”. Staff shortages are rampant. Sometimes when there are benefits (covered by Medicaid), people can’t find staff to fill all of those needed hours. Direct care workers receive little if any respect when they work for companies or agencies, who are “just in this for the money”. Most of these care assistants are working more than 12 hours shifts, and that’s not good or safe for anyone. These positions are among the lowest-paying and that’s a fact. The companies and agencies that hire them, do NOT pass down their profits to their direct care workers, so don’t be fooled by that.

Then there are those disabled people and their families who are mired in bureaucracy and red tape (up to their necks), with no advocates to help them, and sometimes people give up. There are those who can’t meet overwhelmingly strict requirements to get benefits and they don’t know where to turn. They may not have access to transportation either. And what if your job is on the weekends, but there isn’t any accessible public transportation on the weekends?

There is constant ignorance and systemic breakdowns… You name it and there’s a roadblock or some gatekeeper, meglomaniac, couldn’t-give-a-shit, apathetic piece of crap person at the other end.

God, I have so many descriptive words I’d like to insert here …. you have no idea.

This is an article by S.I. Rosenbaum, entitled, “Locked into Poverty – Impossible Choices Forced on the Disabled” – Presented by Microsoft News in partnership with Spotlight on Poverty and Opportunity.

This is Anna Landre’s story. Please click on the link above.

I encourage you to read this because it’s very much real-life for people with disabilities, especially those who are dependent upon others and our society to not just survive, but to thrive. Purposeful, Meaningful, Striving and Thriving – without conditions is key.

Will the world ever evolve?

Locked into Poverty – Impossible Choices Forced on the Disabled

And then there’s Jason DaSilva from New York City… His life story up to this point (and I’m sure beyond) has been very telling about what it’s like to make difficult and often unbearable, heartbreaking choices.

In 2006, 25-year-old Jason DaSilva was on vacation at the beach with family when, suddenly, he fell down. He couldn’t get back up. His legs had stopped working; his disease could no longer be ignored. Just a few months earlier doctors had told him that he had multiple sclerosis, which could lead to loss of vision and muscle control, as well as a myriad of other complications. Jason tried exercise to help cope, but the problem only worsened. After his dispiriting fall on the beach, he turned to his Mom, who reminded him that, despite his disease, he was still a fortunate kid who had the opportunity to pursue the things he loved most: art and filmmaking. Jason picked up the camera, turned it on his declining body, and set out on a worldwide journey in search of healing, self-discovery, and love.

At one time, I had the entire documentary (“When We Walk”) and posted it on my Facebook page. If you have the opportunity to follow him on Facebook or You Tube you should!

We learn from Jason, the disparity that exists between cities, counties and states in the United States that shouldn’t exist when it comes to supports and services for those who have disabilities, but it does. He tried to live near his son in Texas, when his son and his mom moved there, but the system in Texas didn’t support Jason to be able to do this. He lost his independence and he would have lost his personal essence; that part of the human spirit that makes us who we are as human beings, each and every one of us if he would have stayed. He was forced to return to New York City. That’s sad.

There are thousands upon thousands of life stories out there in the world of babies, children, adults who have one or multiple disabilities with varying degrees of severity. Every ONE is precious and their lives have meaning and purpose. I often have told my grandchildren that they are each unique in all the world. To me, that is beautiful and amazing!

Be kind but more, be involved and supportive. Stand up and do what’s right. I shouldn’t even have to write this blog. There are things in this life that should “just be” without question.

I will continue to believe that, “Where there is life, there’s HOPE“.

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