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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Developmental Disability, Disability Awareness & Advocacy, Group Home, Mental Health, Physical Disability, Social Work, Uncategorized

Group Home Residents Often Live In Costly Isolation – Same Difference in Michigan

by Chris Serres and Glenn Howatt, Star Tribune/TNS, January 10, 2020

MINNEAPOLIS — Tim Healy calls the time he spent in a Twin Cities group home “my lost years.”

Healy, 32, has an intellectual disability and needs help with basic living tasks. But for 12 years at a group home in New Hope, he got little of that. He describes a facility so short-staffed that residents were ignored for hours at a time and rarely allowed to venture outside. He says it was a period of numbing boredom, loneliness and doubt.

Today, living with his mother in West St. Paul, Healy feels reborn. Cradling a guitar, he describes his plans to get married, find a job, start a rock band and take skydiving lessons. “It’s like I was a prisoner,” he said. “I’ve been away too long.”

Healy and his family remain furious at state and county officials who administer aid to Minnesotans with disabilities. They say no one told them that Minnesota’s Medicaid program pays for the kind of services that would enable Healy to live at home and independently.

“Tim could have flourished on his own, but we were led to believe that a group home was the only option,” said his mother, Brenda Olson.

Healy’s plight is one example of the way Minnesota is forsaking a legal obligation to promote independence among people with disabilities. Rather than helping develop care plans that would allow them to live in their own homes or apartments, counties across the state continue to steer thousands of Minnesotans with disabilities into facilities that promote dependency and isolation.

State spending on group homes, for Minnesotans with disabilities who receive a coveted form of assistance known as a Medicaid “waiver,” now totals about $1.5 billion a year. That represents about two-thirds of total spending on waivers for people with disabilities — and is more than the combined state spending on agriculture, higher education and pollution control.

Despite that huge outlay, records show that Minnesota rarely conducts inspections or on-site audits to ensure that group homes are delivering the individualized care and daily activities they promise.

As a result, Minnesota has become one of the most segregated states in the nation for housing people with disabilities. In 2016, only 7 percent of Minnesotans with intellectual and developmental disabilities who received waivers lived in their own homes. Last year, some 44 percent of Minnesotans with disabilities reported living in group homes — more than twice the national average and the highest rate in the nation.

“We are spending Medicaid dollars on an entrenched system that segregates people and leaves them with little choice,” said Barnett Rosenfield, supervising attorney for Mid-Minnesota Legal Aid. “It’s completely inconsistent with the law and the purpose of waivers.”

For those confined to group homes, the experience is often one of profound loneliness and frustration.

At a group home in Bloomington, Patricia Wilson sobbed while clutching the portrait of her husband of 35 years. The two were placed in separate group homes after she suffered a major seizure. She has seen him only three times in the past year. Wilson said staff at both homes have ignored her repeated pleas that they be reunited.

In Brooklyn Park, Marrie Bottelson, an artist with cerebral palsy, has tried to forget the 13 years she lived in two group homes, where arbitrary rules prevented her from enjoying a normal social life and pursuing her passion for painting.

And in Sibley County, parents of a 20-year-old man who has severe autism and behavioral problems, Dustin Zahn, were recently told by county case managers that he had to “fail in a group home” before he could use public funds to live in his own apartment with supports.

Sue Schettle, chief executive of ARRM, the state’s main trade association for group homes, acknowledged that providers are often unable to meet resident and family expectations for access to the broader community. The primary culprit, she said, is a statewide shortage of caregivers, which has put group homes in a precarious position. Many homes can sustain just one caregiver for every four residents, which makes it difficult — even dangerous — to take individuals on outings, she said.

To address the staffing problem, Schettle said that ARRM and a coalition of disability organizations plan a major marketing campaign next this year designed to promote direct care as a profession.

“The big elephant in the room is staffing — and speaking the truth about it,” Schettle said. “We have a whirlwind of problems in this state that are largely related to a lack of human resources.”

Officials with the Minnesota Department of Human Services (DHS), which regulates group homes, said the agency has been intensifying outreach efforts to inform people of their options under Medicaid, including new services that make it easier for a person with a disability to live independently or with families in the community. The agency is also exploring ways to simplify the state’s Medicaid waiver system to make it easier for families to access benefits.

“Our systems have gotten very complex,” said Alex Bartolic, director for disability services at the DHS. “No family or person trying to get services should have to understand how all this system works.”

Minnesota’s system of Medicaid waivers, created in 1984, was designed to use state and federal health care funds creatively to serve people in their homes rather than by paying large medical institutions or hospitals. Group homes, which typically house four adults, were seen as a good option for some people.

Today, in some parts of the state, they are the default — or only — choice.

In 55 counties, group homes receive at least 70 percent of Medicaid waiver funds, according to state records obtained by the Star Tribune. In all but four counties, group homes receive more than half of all waiver spending.

“All too often, group homes are the path of least resistance,” said Lee Ann Erickson, executive director of the Arc Southwest Region, a disability rights group in Fairmont, Minn. “We fit people into the system we have built, rather than tailoring services to meet their needs.”

For taxpayers, the practice is wildly inefficient. In 2017, the state Medicaid waiver program spent $104,000 for every corporate group home resident, compared with about $25,000 for those who live independently with supports.

Amy Hewitt, director of the University of Minnesota’s Institute on Community Integration, noted that many people with disabilities “love their group homes” and have close relationships with fellow residents and staff. Even so, she said, the giant supply of group homes — there are nearly 3,800 statewide — has acted as a disincentive to develop more creative options.

In 2018, Minnesota launched a new service covered by Medicaid waivers, known as “individualized home supports,” designed to provide training and direct support for people to live in their own homes. Of the 31,000 Minnesotans on waivers who are eligible for the program, only about 210 have taken advantage of the service, state records show.

“There are many, many people who have no idea that other options exist,” Hewitt said.

On a bright afternoon in August, Cathy Joy Schlager, 64, who has Down syndrome, grinned and waved from her wheelchair as her sister pushed her down the wide streets of Lakefield, a quiet farming community in southwest Minnesota. Local residents, seeing her on a rare outing from her group home, hollered her name from yards or porches and honked their horns as they passed.

For years, Schlager volunteered at a local nursing home, where she brightened people’s days with her wry grin and homespun crafts. She played on softball and bowling teams, joined a traveling clown troupe with her uncle, and wove colorful quilts sold in a thrift shop. At dances organized by a local disabilities group, Schlager would croon along to Johnny Cash on the karaoke machine.

“It doesn’t matter where we go in this town, people know Cathy,” said her sister, Heidi Arndt. “She’s famous.”

Then in the winter of 2018, Schlager suffered a sudden deterioration of her vision, which made it impossible for her to get around without help. Her two sisters, who live and work nearby, decided they could no longer care for her alone. They moved Schlager into a small, four-bedroom group home in Lakefield overlooking cornfields. The pain of separation was mitigated by assurances from managers at the home that Schlager would receive one-on-one care and be taken out in the community at least once a week.

“Our big mistake was believing them,” Arndt said.

Almost immediately, the sisters noticed a disturbing pattern. When they dropped by after work, they found that Schlager had been left alone for hours. Apart from a few hours each weekday at a local activity center, the promised outings did not occur. Her requests to go out with friends or volunteer at an assisted-living facility — just a block away — were ignored.

“We noticed that she was spending a lot of time alone,” Arndt said.

One afternoon last spring, Joni Hanson, one of Schlager’s sisters, dropped by the group home and found her sister slumped over in her wheelchair, facing a blank wall, while two staff members played puzzles in a distant room. She had been sitting in the same spot for nearly three hours. Her dinner lay on a plate in the kitchen, untouched and out of reach.

Pressed for an explanation by her family, managers of the group home repeatedly cited a lack of staff. Most days, the home had just one employee to care for the four residents, which made it unsafe to take anyone out of the home. Even short walks around the neighborhood, so Schlager could get some exercise, were considered a risk. Her sisters said Schlager’s muscles were atrophying after so many hours in her wheelchair.

The executive director of the group home operator, Habilitative Services, Inc., said the company is dedicated to quality service, including providing residents “with opportunities to access and enjoy activities in their communities.”

Janice Reyes has worked in hospitals and senior homes in southwest Minnesota since the 1960s. “I’ve seen a lot,” Reyes said, holding up calloused hands. Yet Reyes said she found the conditions at Schlager’s group home intolerable and quit after a few months. The hardest part, she said, was the guilt that came with working 10-hour shifts alone — unable to take her clients into the community.

“Cathy is a ray of sunshine around here,” Reyes said over coffee at a cafe. “She doesn’t deserve to be hidden in the shadows.”

In 2014, federal health regulators approved sweeping new rules to promote inclusion among people with disabilities who receive Medicaid benefits. The requirements were explicit: Every setting where a person receives Medicaid funds must be integrated into the greater community. This meant that people living in group homes were entitled to the same freedoms that people typically have in their own homes — including the opportunity to control their schedules, choose their roommates, have visitors at any time and decorate their own rooms.

The rules were hailed as a historic victory by disability rights groups. In Minnesota, however, enforcement of the rules has been minimal, and public awareness of the new protections remains low, say disability rights groups.

Starting in 2017, the state has required group home providers to submit documents, known as “attestation forms,” to demonstrate that residents have full access to the community. The DHS has conducted thousands of remote reviews, known as “desk audits,” of these forms, largely to ensure that the facilities are actually submitting the paperwork, state records show.

Yet the system is largely dependent on group homes self-reporting problems. The DHS has only conducted 86 site visits of group homes since the new federal rule went into effect nearly six years ago.

Without regular spot checks, it is impossible to determine if group homes are actually delivering the services they list in attestation forms and whether residents are getting out into the community, said Roberta Opheim, state ombudsman for mental health and developmental disabilities.

“Simply requiring providers to submit a form is not enforcement,” she said. “It’s almost as if the (new rules) do not exist.”

There are also signs that Minnesota’s regulators have not kept pace with the growth of the group home industry. Complaints of abuse and neglect at state-licensed group homes have doubled since 2014, to more than 3,400 a year. At the same time, the percentage that are being investigated on-site by the DHS has declined consistently each year, falling from 46 percent in 2014 to 16 percent in 2018, state records show. Only 31 percent of maltreatment complaints have been substantiated over the past five years, state data shows.

Now Minnesota faces heightened scrutiny from a federal judge. In 2016, several group home residents sued the DHS, alleging that the state’s heavy reliance on the facilities is unconstitutional.

A federal judge hearing the case ruled last fall that the agency was violating due process rights by failing to inform people that they can use Medicaid waiver funds to pay for more individualized housing options, and then failing to notify them when such services were denied. The agency’s practices, the judge ruled, forced individuals to wait indefinitely for requested services without the chance to appeal and obtain a fair hearing.

U.S. District Judge Donovan Frank called for a “systemwide remedy” to improve the lives of people living in group homes.

“Actions speak louder than words,” said Justin Perl, litigation director for Mid-Minnesota Legal Aid, which represents the residents. “For decades, DHS has made promises to provide services in the most integrated setting, and yet it has failed to honor that legal obligation.”

It was almost dusk, and a 2-year-old boy with a head of curls was gazing expectantly out the window of a small home in Brooklyn Park.

The boy screamed with joy as Marrie Bottelson rolled her wheelchair to the front door.

“Hi, sweetheart!” she yelled, swinging the door open with her foot. The boy crawled onto Bottelson’s lap as she rolled across a living room packed with her colorful paintings and children’s toys. The smell of roasted chicken wafted from the kitchen.

Not long ago, this cheerful domestic scene would have been unthinkable.

For 13 years, Bottelson, who has cerebral palsy, was confined to two group homes where her daily life was severely restricted. Because of limited staffing, Bottelson said, she was required to be in bed by 7 or 8 p.m. Bottelson, 44, is a successful artist who sells colorful greeting cards and paints portraits at art shows and on commission; yet she had no space to do her work and house rules prevented her from painting in her room.

“Everyone said I would be safe (in the group home), but I wanted more out of life than just being safe,” said Bottelson, who is a plaintiff in the federal lawsuit. “All I wanted was a normal life.”

Then, at a state seminar on disability rights in 2013, she met others with disabilities who were using their Medicaid waivers to live in their own homes and pay for their own staff. No one had ever told Bottelson that such an option was possible. She immediately requested a similar arrangement, but was told by her Hennepin County case manager that she was “not independent enough” for individualized housing.

It took another three years of mediating with county officials before Bottelson fulfilled her dream. She now lives in a warm and bustling home, sharing it with Victoria Yang, a live-in caregiver, and Yang’s two children — Trystan, 5, and Felton, 2. The house is owned by Bridges MN, which provides independent housing for people with disabilities. Her waiver pays for Yang to help Bottelson get ready in the morning and cook her meals, and for transportation to the day activity center where she produces much of her artwork.

No one tells her when she can come or go. Cats jump into her lap as she paints. The children run and grab her shoes in the morning, and kiss her on the forehead at night. Bottelson affectionately refers to the children as “my little family.”

“People used to look at me and say, ‘Oh my God, she can’t live on her own.’ But I showed them that I can!” Bottelson said proudly.

 

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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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Music, Uncategorized

Mantra for the Heavy Heart

I find this to have a calming and grounding affect on me – especially when I’m getting ready to make an important phone call or contact with someone, or attendance at a meeting – on Max’s behalf. It reminds me of WHY I must do what I have to. I am centered “here”.

You might not know this about me, but I don’t like conflict or confrontation – but I do what I do for Max’s sake. I decided after he was born that I would always be his voice. I’d be his voice until I was able to give him his own voice.

Max will have his Dynavox Tobii set up in January and I expect that he will be using this device across all environments. I’m looking forward to be able to give him choices for music and stories as well. I am so happy that he will have this opportunity. I realize that there are many nonverbal people in the world who have complex communication needs, that don’t have this. That make me very sad.

“I WILL FIND A WAY” is my Mantra in that regard. Whatever is needed to get the job done. It was tough this past week and I have a lot of work to do this coming one.

I like stepping outside of the real and present world, and pulling out of myself that part of my being that sees beyond the mundane in this world. I like to stand to the side and let the ideas flow.

It’s after midnight. It’s time to call it a day.

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Disability Awareness & Advocacy, Uncategorized

Down the Rabbit Hole – Lost, Dazed and Confused and yet…

Just when I think that I can’t take one more step forward, and that I’ve exhausted all avenues of escape for Max, there’s a glimmer of hope. When I say “escape” for Max, I’m talking about him having a good to great to excellent quality of life. That means to me his ability to “get out there” and have fun in the community, while he explores different areas of interest.

I’ve been in the trenches the past few weeks… or maybe more like in a fox hole, fighting with myself, while I fight with others.

EndhazomGurl

Why can’t they just do their fucking jobs? Ugh. It’s ridiculous.

More so, it’s insane that I have to FIGHT for what’s RIGHT. And I hate what this is doing to me as a human being. But more so, and this is THE most important thing – What it’s doing to Max.

I’ve been wavering, which is exactly the opposite of what I should be doing. But this is what happens along the way when you have a child/adult like Max, who is so disabled. It makes you weary and you have to take the time to re-coup.

It might “appear” (to others) that Max can’t do or communicate anything and therefore, nothing is expected. You know…. like…why don’t I just go away and STOP advocating for him? Why don’t I let the locals “be” to do basically nothing but warehouse him?

Is it because I’m a tenacious bitch? Or maybe I’m just here to make them do their jobs and make their lives miserable. Could be (kinda).

But no. I do what I do because it’s the RIGHT thing to do.

I’ve tried repeatedly to educate these people. For over three years I’ve brought up all kinds of issues. I’ve talked about his rights, the rules. I’ve been snarky. I’ve been nice. I’ve tried to come up with (reasonable) solutions and I get nothing in return.

I’ve tried with state advocacy organizations and apparently I or Max either live “outside” their jurisdiction or Max’s problems are not the type of problems that he can get support from them with.

But I keep moving forward, telling his story over and over again. I’ve tried to rectify his issues, while trying to keep the fires from raging to keep him from being burned.

And what was that about the “squeaky wheel gets the grease”. Sometimes, yes…. most times no – unless you find the right person.

I’ve now contacted his state representative, who sent me a HUGE packet of information to glean from. I LOVE searching through RULES and REGULATIONS and LAWS!!! To me that’s like the “key to the kingdom” of FREEDOM and LIBERTY for Max. It’s ammunition. It’s like being able to put that last puzzle piece into place and having a true work of amazing and beautiful art in front of me – created from all those little misshapen pieces.

I’ve been in contact with the Office of Recipient Rights, and there is an ongoing search for information (and hopefully a quiet investigation beginning? ).

And I’m still waiting to hear from another person at the state level when it comes to the question of Self-Determination and Max’s lack of that being offered.

I’m growing inpatient and I’m not sure at this point if the attention I’ve gotten (through email and phone) has really accomplished anything, other than temporarily placating me. We’ll see.

I thought it all was beginning to move forward….

And yet…. within the past 48 hours, the local DHS just tried to cut Max’s Health Benefits off. Can you believe it? For now, he’s safe.

I’ll write about that in my next post. What a shit show. Oh well, the ACLU is already in the county here, dealing with some other outlandish, discriminatory bullshit, so how convenient is that?

Off to war I go….

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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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Disability Awareness & Advocacy, Mental Health, Uncategorized

In Defense of the Vulnerable – How the Complaint/Appeals Process in Michigan Makes Life Worse

This is all about our most vulnerable citizens. Our friends and family members. All of our loved ones. It’s about those people who are elderly and the disabled who have no family or friends and are at the mercy of those put in charge to make sure that they are cared for. The elderly can be disabled. The disabled can be elderly. Some people are born disabled and others are disabled in accidents and by poor life choices. It happens. Be compassionate. Some are disabled by sickness and disease. No one asked for any of this. There should not be any blame. We’re all unique and are who we are through our life experiences. Namaste’.

EVERYONE isn’t that far away from losing it all – and being poor. Accidents and illnesses happen every day.

We all need to stick together and support each other.

Remember this – everyone in their lifetime will become disabled in some form. Let that one sink in. So…

Below are the beginning questions on the State of Michigan Department of Attorney General’s (AG) Consumer Complaint/Inquiry Form. I looked to the AG on behalf of my son. I had previously filed a recipient rights complaint and went through that process and appeals, locally and at the state-level, which turned out to be a total waste of my son’s time. Six months of his life gone and no one was held accountable for the harm and long-term damage caused. All involved and responsible, got to walk away with no consequences for the medical neglect that he endured and is still dealing with physically.

And so…

Here is the MI Attorney General’s Consumer Complaint/Inquiry Form here (to print out) and online here (to fill in online).

Please be aware of the following:

Complaints and inquiries become public records when they are submitted to the Attorney General’s office, and under the Michigan Freedom of Information Act, copies may be subject to disclosure to anyone who asks for them.

A copy of the complaint will be sent to the business against whom the complaint is issued. An accurate company Fax number will expedite processing.”

(OMG, they actually want to EXPEDIATE this process!)

– A copy of the complaint may be sent to other governmental agencies.

(So if your complaint is against a government agency, you’re fucked.)

” – Please be particularly cautious with information containing your Social Security number, credit card account numbers, etc. for security purposes. If you believe it is necessary to submit such information, you should mail that information and the corresponding complaint instead of sending it electronically.

Do not use punctuation when providing names and addresses.

Wow. Just wow. Nothing like putting a target on your back, eh? No guarantees of protection from retaliation. No protections at all. So if you’re making a complaint against ANYONE (could include a local, county, state business, agency or department) they get a head’s up – so that they can harass you, “threaten” you, retaliate against you in all kinds of ways.

I called the Michigan Attorney General’s office, without giving my name (of course), to ask about “protection against retaliation” if I filed a complaint.

I was told that I probably wouldn’t have to worry (right away), because whoever I was filing a complaint against wouldn’t know “immediately” that I was filing a complaint (unless you fax it – see above- so that the AG’s office can EXPEDIATE the process).

I was told that it would take at least a couple of weeks to fulfill any “freedom of information” (FOIA) request – without mention of the fact that “A copy of the complaint WILL be sent to the business against who the complaint is issued” – so then what? Sit tight?

Oh joy. That just makes me want to get right out there, jump up and down, and scream from the rooftops that my son was harmed. Not.

When I asked this question (about protection from retaliation), the person in the AG’s office had to leave the phone to go “ask someone” about it. Why? Because apparently, no one had ever asked that question before?! Fuck me! Really?

So WHY would anyone ever want to open themselves up to retaliation (which comes in many forms and degrees of severity), making their lives and the lives of their loved one more miserable (and potentially more dangerous)?

I’m curious to know how it works in YOUR state?

I’ve also learned, per personal experience, that the State of Michigan has stacked the deck against any form of justice or accountability/responsibility when it comes to their own legislature, under Michigan’s Mental Health Code.

This ONE paragraph in the decision letter that I received from the MI Department of Health and Human Services (how ironic) DESTROYED any hope of the truth coming out and overcoming evil, while proceeding to hold those responsible for the damage that they caused. It said:

“The Department will review the requested information and either uphold the original decision or return this matter to the (local/original) community mental health for additional investigation and consideration”.

WHY? Why would anyone think that this would be reasonable ANYWHERE, but especially in the United States of America? When it comes to full-disclosure; gathering ALL of the facts, with the expectancy that there would be no conflict of interest, where is the fairness and justice in how appeals are handled? Why would the Michigan Department of Health and Human Services/Department of Recipient Rights send this BACK TO THE LOCAL APPEALS COMMITTEE TO….. what? …. rule against a decision they’d already made? It certainly gives the appearance of protecting their collective backs – at the expense of my son who was neglected and harmed.

I’m betting that this has happened to many individuals and families in the State of Michigan.

The Michigan Department of Health and Human Services can do this legal “roundabout”, according to Michigan’s Mental Health Code. (when I locate this elusive mental health code, rule or reg, I will edit this post and add that part). I had it at one time, but I have stacks and stacks of records and files and I want to get this published.

The only way to change (the unfairness/conflict of interest/lack of protection from retaliation) is through legislature (I’m told) – which I’ve looked into and believe me, it’s not happening. I am still waiting two months out for my son’s state representative to get back to me. I am not holding my breath. I’m too smart (experienced) for that now.

Isn’t that sad? It’s no-man’s land out there. But I still keep on keeping on. I’ll figure it out, and when I do it will be all for the good.

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