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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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, guardianship, Uncategorized

Update: Emily Delph – Still Suffering to Survive in Michigan.

Small in stature, with severe, multiple disabilities (cerebral palsy being one diagnosis), Emily Delph continues to be large in her determination to survive a broken legal (probate court) system in Michigan and currently inadequate medical care, on the west side of this state. Michigan is called the Great Lakes, but there’s nothing great about the medical neglect and yes, abuse, happening to Emily since she was taken from her mom. Emily is languishing and deteriorating in a nursing home – when she should be home with her mom, receiving the great care she’s always received. She should be home with her lights and toys, computer, movies, therapies, community outings, music; being engaged, entertained, happy, but now….. she has nothing.

There were NO neglect or abuse charges (there never was) against Holly Delph – and the court recognizes and everyone who has testified (10/24/2019) agrees, that before Emily was taken from her home and her mom (09/17/2019), that she was well taken care of. Her health was not just maintained, but she thrived when her mom moved to stop looking to Network 180 to do what they were suppose to be in place to do (provide access to her community), and Holly moved ahead with warm water (pool) therapy and getting Emily involved in her community herself – going to special events. I will include pictures and video at the end of this post.

What actually happened is based entirely on the dislike of an older white woman towards a young, black woman – even though that black woman is severely limited (total care) physically and is nonverbal – which made Emily Delph an “easy mark” for an entitled, prejudiced, closed-minded, cruel bully to move in and do her worst. This is the type of person who can’t stand that someone like Emily would even exist – especially within “her” world, and worse, in this woman’s mind, Emily’s mom is white! Apparently, THAT was the last straw for this woman. I can’t believe that this is 2019 and there are antiquated, ass-backwards people like that still out there – but eh, look at the POTUS that we have today, who incites the worst of the worst . It’s repugnant.

REMEMBER WE MUST CONTINUE TO RESIST HATE!

When Emily’s mom, Holly Delph, got up to speak on behalf of her daughter during the Michigan Attorney General’s Elderly Abuse Task Force Tour, (which has proven to be a huge failure and mostly a PR stunt) held around the State of Michigan and in Kent County, this privileged white woman was OFFENDED. Yep, she was offended. It gets worse.

This woman had set up shop in the back of the room, as a Representative of Area on Aging in this county. You heard that right. She was suppose to be there as a support and resource for families and individuals in need. She was quite the opposite.

She was the beginning of Emily Delph’s imprisonment and medical neglect. This woman’s false accusations, without proof, sealed Emily’s fate. This was further perpetuated by a probate court system and judge who handed over Emily’s “case” (person) to a state-appointed, public guardian named Karin Van Sweden.

This Representative of Area on Aging said that Holly was “irrational” and “hitting her head”, which is not true (witnesses who were there have been located and will be providing testimony/affidavits). Holly didn’t even find out about “the why” of any of this until she went back to probate court on October 24th! Until then, she had NO real idea what happened, although there were some thoughts on this related to other false and misconstrued statements made on social media – you know…. “if it’s on the internet, it must be true” bullshit.

And to-date, Emily still does not have her wheelchair, orthotics (leg brace worth $3500), toys or clothing, while she is being held captive at The Laurels of Kent County (nursing home). Michigan’s Licensing and Regulatory Affairs (LARA) has been called in to investigate. When asked by Michigan’s LARA where all of Emily’s things are, the court-appointed, public guardian commented that she “was afraid to bring in everything because they might get lost”. Just wow. Emily’s wheelchair is customized as are her orthotics (leg/foot braces) which provide for her positioning needs, so that Emily is held in comfortable, therapeutic positioning – to keep her from regressing physically. To my knowledge these items have yet to be produced. Who knows, maybe they’ve been sold. Who cares, right?

To further explain, for those who don’t understand how Community Mental Health in Michigan works (and believe me they all work differently, depending on which county you live in) and they all interact with the State of Michigan differently as well, I have included an explanation below.

Holly had tried to work with Network 180 for quite some time.

For those who are not familiar with Network 180, this is the same as with other Community Mental Health locations (county agencies) in Michigan. Sometimes mental health in different counties, go by different names. They are all in place under the Michigan Department of Health and Human Services. They are suppose to be in place to support and serve not just those with mental illnesses; children and adults with Autism; challenging behaviors; those dealing with addiction issues, but they are also suppose to work with individuals who are developmentally-disabled (and of course their families).

Network 180 is based in Kent County (Grand Rapids), where Holly and Emily live. Network 180 was suppose to provide services and supports to Emily and Holly in the form of respite and community living supports, but because (their reasoning) Emily was “so disabled”, they couldn’t find trained/experienced workers to come in-home and those who could accompany Emily out into the community.

Unfortunately, community mental health has long been lacking in the area of providing appropriate/necessary supports and services to those who ALSO have physical disabilities – especially to those who have the severest forms. Within the State of Michigan, those who are developmentally-disabled AND more severely, physically-involved (severely, multiply-disabled) are indeed the minority within the disability community.

Those who are more medically-fragile, non-ambulatory and nonverbal are the most silent of the silent minority. Therefore, they are easily taken advantage of and too often are disenfranchised and so are their families. It’s next to impossible for these individuals and their families to fight for supports, services and their civil rights – as most of their time is spent simply getting by and surviving. So therefore my reason for trying to explain some of this to those who “just don’t know” or have no idea what’s going on here and in the State of Michigan right now.

Whether any of us would like to admit this or not; to recognize that discrimination does exist… it most certainly does. To ignore it, is not just to condone it, but to perpetuate it. Over the years, Holly “learned” that it does exist – as Emily, adopted from Haiti, is black. My understanding and I have heard this from more than one person, is that this part of Michigan is pervasively discriminatory and prejudice against those who are not white. Absolutely, attention needs to be drawn to that fact and how inhumane and disgusting that is.

And so here we are…. Or rather, here is where Emily is at.

“They don’t follow protocol about basic cleaning around stoma. There are big reasons why this nursing home has so many fines.”
and
“Emily is dying. I’m no longer going to be nice about staff. The condition I found her in was horrible. These people cant even clean a PEG.. her leg was all twisted. Found a stink bug”.
– Holly Delph –

Better times…..

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Developmental Disability, Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part Two

The Neverending Story – The Nothing

This next post has to do with the reason that I decided to start a blog – and why I choose (at this point), to be anonymous. I may not always write well, but it’s still important to write – and put the truth out there for others to read. I hope that this might lead others to make a difference in their own communities – wherever that might be. Together, even one person at a time, we can right the wrongs in the world.

My son lives in Purgatory.

He’s neither here nor there when it comes to a good quality of life. It hasn’t been for my lack of trying to make it better. After all these years, I’ve hit a brick wall. It’s a wall of nothingness and nowhere. It’s impenetrable and feels like a presence; a thing that exists that seems physical – that I can’t see my way around. It’s a wall of apathy that appears to be growing day-by-day.

My son, who lives (I’ll say it again) in a group home, was medically neglected last year, and because of what didn’t happen is the reason that I felt that it was necessary to tell HIS story, which I believe is the story of many people. I know that this happens, every day, to many people in the United States and most certainly out there in the world. It’s happening at this very second.

I’ll add to that, the fact that no one in my morally and ethically irresponsible, backwards county even tries to understand that ALL people, even the most-involved – whether physically or developmentally-disabled – have the same feelings as ALL people do. Or if they somehow (in the deep recesses of their minds) know this on any kind of level – they don’t recognize the inherent right of each individual to be treated with kindness and respect – that is not based on some kind of monetary valuation. It shouldn’t “cost” to be considered a valuable human being. Every human being is valuable.

Max is a young man that lives with a small group of people who are old enough to be his grandparents and yet… taking a trip to Walmart or going through McDonald’s drive-thru is considered a “community outing” and he lives in a college town! There is a lot more to do here, but no one has any vision. No one cares and there is such a lack of creativity that it stymies and infuriates me. WTF?!

I could go on and on. Here, everyone in power, has that old-style, group home mentality thing going on. It’s miserable. It’s 2019. Not the 1970’s. Unfortunately, it does matter where you live. It matters which state you live in. It matters what county you live in. It matters what your base beliefs are and it matters what kind of people live in your community, as in are they good people who care or are they selfish and apathetic? And so what happens to many, many people in the United States (and I’m sure in other countries in the world… but I’m waiting to hear from others so I can include their personal stories in this blog)?

Warehousing. That’s what happens.

Those who are severely, multiply disabled and nonverbal – and have no way to communicate their wants, needs or desires in an “understandable” way to others who are not disabled, exist in a vacuum. They live in a kind of limbo-land. This includes the elderly who are developmentally-disabled and live in group homes. It happens in nursing homes. I’ve seen it up front, real and in-your-face.

This is the only place on this blog where I will write specifically about what happened. I have relayed the course of events to everybody that I know and all of those who are involved in Max’s life. This includes many advocacy groups/organizations at the state-level. This has led me to the horrendous realization that these are most certainly not in place to help individuals or their families. They’re more like money-raisers FOR the people that work there.

Back to Max.

Max had skin breakdown in the coccyx area. In the past, the plan had always been for him to have complete bed rest until healed – with of course scheduled range of motion and repositioning every 2 hours. Skilled nursing was called in by order of his primary care physician (PCP). The nurse, following dr’s orders, wrote in the notes that he was only to be out of bed for meals.

Almost a MONTH later she learned, and then I learned (after she notified me on the same day that she found out), that he was up and all over the group home, sitting up in his wheelchair, and out in the community going places – when he was only suppose to be out of bed for meals. What were they thinking? Why did this happen – especially considering what had been protocol for his care in the past?

After the nurse called me, I immediately called his PCP – who was out of the office on vacation. I spoke to a nurse practitioner (NP) – who was covering for the PCP. I explained what I had just discovered and we consulted.

It was agreed that the order would be faxed to the group home, that stated Max was to have “complete bed rest until healed” – and this was done. I have in my pile of documentation, a copy of this ONE page fax.

Probably within an hour of this, I received a phone call from a representative of the group home (contracted by the local CMH) telling me that Max would NOT be eating or drinking in bed.

So they willfully went against doctor’s orders and THEN got him up just for meals.

The nurse was lied to when she was told that they (the company that owned the group home) had a “written policy” that residents were not to eat or drink in bed, as this was reasoned as a choking hazard.

The nurse asked for this written policy. This was never given over because one didn’t exist. Of note, Max has a hospital-style bed where the head rises; the knees rise – either together or separate and the entire bed goes up and down! Many people are fed in bed and given drinks… you know…. like people in hospitals who are ordered to bedrest. What it REALLY came down to is that there weren’t enough staff for someone to sit or stand there to watch him after he ate – to make sure that he didn’t aspirate or vomit (reflux) for 15 minutes to ½ an hour. Not enough staff….not enough staff…. and this is how it goes in group homes across the nation. Number one reason – the pay sucks and the companies who own the group homes suck even bigger.

Max was harmed. The damage was already done. During the time that Max has lived in this group home, he’s lost a huge amount of weight. No one knows why at this point. He eats and he eats well. It’s still a mystery to be solved, but the seriousness of this grew when the medical neglect happened.

Because doctor’s orders weren’t followed, Max lost even more weight that he couldn’t afford to lose – from muscle atrophy. This has also exposed him to increased risk of worsening skin breakdown in the future. He no longer has a “butt” or the padding that goes with it! It took over a month from the time this began until it finally ended in healing …. because they never followed doctor’s from the beginning. If they would have followed what “worked”, and kept him in bed until healed, he would have probably been totally healed in 3 days (historically).

I filed a recipient rights complaint against the group home. I would like to note that my intent was that the complaint was suppose to include the local CMH, because THEY are the ones that contracted with this home to provide care for my son. Therefore, it has always been my opinion that they were just as responsible (culpable) when it comes to the care he receives… or not. The buck stops there. But THEY bowed out and didn’t do what they were in place to do. His CMH worker (as a titled social worker) was by definition a mandated reporter. She didn’t do her job. She did not protect Max. But within this system is a “I’ll scratch your back, you scratch my back” agreement. It happens in the court system as well. It happens in politics all the time. It seems to be the way-of-the-world.

So over the next SIX MONTHS I went through the process of denial at the local level (they said no wrong-doing) through the local CMH. Then I filed an appeal of this at the local level (again CMH), which led to another denial by the CMH’s appeals committee (was I really surprised?).

The next step was to file an appeal at the state-level, which was also denied.

Of note, I contacted Adult Protective Services (APS) once I discovered what happened and the resulting damage that not following orders caused Max. Ultimately the county APS investigator refused to take additional information and pictures from me – that further demonstrated the medical neglect. He said that he “had all that he needed and he had interviewed everyone”. He interviewed staff – who were afraid for their jobs. I live in the real-world and yes it happens. People lie; don’t tell the whole truth, etc. And it HURTS the vulnerable and it makes the world a miserable place. The struggle is real.

I was shocked when he told me this. I sat there mortified. I had just been confronted with actual corruption within a broken system! My eyes were finally open.

After I filed a complaint at the state-level (DHHS), I received a letter from them acknowledging receipt of my complaint, with the statement that they would get all information regarding this from the local CMH and they would either uphold the original decision (which was a denial) or refer it back to the local CMH for further consideration and investigation.

Now WHY would this be referred back to the CMH that denied it in the first place?

Well…. because it’s written into our state’s Mental Health Code.

How’s that for fucked up?

Max never had a chance. The deck was and is still stacked against him and others.

I contacted three different attorneys. None would take on this case. Want to know why? Because it wasn’t worth it to them. Period. Max didn’t die. Max healed. Max wasn’t permanently (further) maimed, disfigured or harmed (I could argue that). The harm wasn’t ongoing (I could argue this too – he ended up in Physical Therapy that I initiated on his behalf). It wasn’t worth their time and they wouldn’t let me explain anything further past their “intake interviews”. And I am poor. In fact I am below the poverty-level on SSI/Social Security.

The next step after denial at the state-level would have been to take it into court. I couldn’t afford to do that and none of the advocacy organizations that were suppose to be in place to help people with disabilities and their families would take this on. This is the world that we live in now.

But I’m not giving up.

I DO believe that it’s important for those reading this blog to see the TRUTH.

When I’m able, I will add blacked-out documents to this post, because it’s really happening, and I know that it’s happening to others – especially to others who have no one speaking for them or advocating for them.

And after all, this is …

The Underground Advocate!

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Disability Awareness & Advocacy, Uncategorized

A Child is Born – Part One

It’s been many years of constant love and trying to do the right thing; always struggling with the powers that be … and thinking that others who were supposed to be in place to help, were also on that same page. Sometimes (okay rarely) I was right – but more times, very wrong

The unfortunate truth, in being the parent or guardian or advocate for a child/adult (or for an individual with a disability), is that this has always been basically a flip of the coin. My real-life experiences have been long and many.

I have learned that laws, regulations, policies and guidelines sometimes mean something and sometimes mean nothing at all. It all depends on the commitment of others. It depends on who the doctor or specialist is and “their staff”. Sometimes their staff drop the ball, are rude don’t follow through or just don’t get it – and it doesn’t matter because they get paid anyway.

It depends on the special education system, whether teachers, therapists (Physical, Occupational Therapists and Speech Language Pathologists). And then there is the supervisors and administrators. You can have the best teachers and school therapists and if administration doesn’t support them to support your child, well…. much is lost if not entirely.

And we have next those at the county-level, namely community mental health, under the state auspices of control (control of funding and budgets), who are mostly social workers with a bachelor’s degree who come out of college not knowing anything on a moral or practical level. Forget any need to hone your craft or go beyond what they “learned in college”. I term them as “the gatekeepers”, who say “no” on a regular basis… because they choose to remain disengaged, ignorant or lazy.

They’re more involved in appeasing “the state” when it comes to how the money is spent…. or not spent.

I think that when these young and inexperienced social workers, when they start to work on behalf of others “less fortunate”, are too often taught (assimilated into a kind of “collective”) that it’s all about the money … as in don’t spend the money. So no wonder that there is a desensitization-process and a disconnection between what they should do and could do on behalf of people with disabilities – and then it’s a given, that those who are hurt the most are the most-vulnerable. That minority are those who are severely-multiply disabled.

I’ve heard just about every reason for “no”. They like to say they have a “lack of resources”; “We don’t have resources for that….”. We don’t have to “provide that support or service” because it’s “not written in a policy manual”. Or they outright ignore repeated attempts by parents, guardians, individuals to change the system, who are trying their best to get it to work for their person.

Why yes, “they” (those who are disabled) are PEOPLE. People are human beings. (I felt the need to clarify that one!)

First there were the medical issues and meeting those needs in keeping Max alive. He was a preemie, like many, many other babies before and after him. He was tiny and precious and okay, oh-so-cute – and my child with a precarious and unknown future.

I was actually afraid to love him in the beginning! I had been told by a neonatologist that an infant born as early as Max, was certainly at the highest risk of developing some huge problem with some major organ or system in his tiny body. Isn’t that the saddest thing ever? Being afraid to love your child? To become attached? Awful!

What to do? What should I know? I had never had a child with severe, multiple disabilities as his. I decided I would be brave and I knew that I loved him no matter what, and I knew that I would do whatever I had to, to protect him – against all odds. It’s been that way ever since.

This little guy came home on an apnea monitor, medication around-the-clock to keep his heart rate up. He was on oxygen. Very scary times. Absolute anxiety and this desperate feeling churned inside of me. What was this awful emotion? It was stress rolled up into a ball of fight or flight. I remember bathing him for the first time in the NICU, knowing as family members watched, that I had to look confident so that they wouldn’t be scared. I had to be brave for Max’s sake.

He couldn’t come home until everyone in the family learned how to do infant CPR. And then there was the throwing up and every little ounce of formula that he’d drink was mostly coming back up. It was a huge struggle….

His life, his quality of life, has always been a struggle and very frustrating when people have not cared to do their jobs. I mean, why go into jobs (or fields related to the human condition) that require you to be resourceful, kind, patient, persistent and strong? These types of jobs aren’t careers, also in my opinion, but should be termed as a “calling”.

So I jump forward, many years into the future and he’s grown up into a handsome young man with a brilliant smile; with eyes that (must) express his both funny and serious soul. And what is life like now?

END OF PART ONE

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