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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Developmental Disability, Disability Awareness & Advocacy, Mental Health, Social Work, Uncategorized

Self-Determination: An Introduction

Max doesn’t have Self-Determination in his life. His life is extremely limited. He is not given opportunities to make choices. It’s a same-day, same-shit kind of existence.

Max has a CMH “support coordinator” (they go by other names too….case manager, CMH worker, etc.), but there is no coordination of the supports that he should be receiving to be self-determined.

County CMHs (under the auspices of the Behavioral Health and Developmental Disabilities Administration- Michigan Department of Health and Human Services) are suppose to be a “system” that supports self-determination. They don’t. Go ahead, ask anyone who has an child/adult (especially one that is severely, multiply-disabled) in this “system”, how it works for them. There are some real human, real life problems out there, and the people that could make a difference, are doing nothing. They seem to have a lot of “meetings” and there’s no action. There’s no trickle-down effect. There’s no meaningful reaching out to stakeholders (individuals/families). They really don’t “do” self-determination. At least not without a fight from individuals and families. It’s exhausting.

Locally, several years ago, it WAS getting better. They were going in the right direction, and than people started to retire and “new” and younger people (social workers) came on-board at the CMH here.

They were inexperienced. They had absolutely no idea what they should be doing for those that they were suppose to be working for and on behalf of. They still don’t. They were not and did not want to become familiar with the uniqueness of those that they “support coordinated” for. They didn’t want to educate themselves any further as they progressed in their “careers”. They either never cared, in the first place, when they went into this particular field (human services) – or they were and are just lazy. Maybe “Social Work” sounded kind of good and easy, and something that they could learn all about in college, and BAM! off they went and they got paid to do whatever they were told to do (indoctrinated), forgetting WHY they were in the position that they were in. Forgetting or intentional, it’s all the same. It’s wrong on such a fundamental human level.

I take great offense when it comes to those who have such control over the lives of others – their very quality of lives; their comfort and safety; their happiness – and blow it off.

I’ve seen Max ignored totally between annual Individual Plan of Service meetings (IPOS). If I never said anything; if I never addressed any problems or issues, there would be NO communication at all. I absolutely hate the group-home mentality. Even if a person has no family or friends checking in on them, they have a right – yes a RIGHT to be treated with kindness and dignity and care.

They (CMH’s) KNOW about self-determination and they’re suppose to support that in the mental health system – as Max is someone with a developmental disability – but per usual, he’s even worse off than others, as someone that is nonverbal (has complex communication needs) and non-ambulatory, living in an antiquated living environment that still thinks of itself as providing the basics of what he needs to survive (be warehoused) and that all they have to do. The bare minimum.

That’s SO wrong.

I’m sure that this topic will come up again down the road, because I am trying to make positive changes on Max’s behalf, even as I see things worsening.

I’d really like to hear from other individuals and families; guardians and caretakers, care providers.

I know that the problem is wide-spread.

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