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.

 

Standard
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….

Standard
Disability Awareness & Advocacy, guardianship, Uncategorized

So much for the Michigan Elder Abuse Task Force

By Gretchen Rachel Hammond

On March 25, 2019, during her announcement of an Elder Abuse Task Force, Michigan Attorney General Dana Nessel laid out seven initiatives for guardianship reform in the state which she touted at listening sessions, directed at the elderly population who were concerned about abuses of the system by court-appointed guardians, as initiatives she could easily push through the legislature. However, the membership of her Task Force included a number of pro-guardianship organizations. Obviously, they have pushed back.

See below photos below:

The initiatives as proposed March 25, 2019 are in the left photo. The photo to the right shows the initiatives as they appeared in Nessel’s Elder Abuse Task Force news letter published October, 2019:

Of note:

1) The limitation on the number of wards has been removed. Guardians with hundreds of wards each cannot possibly ensure their well being.

2) The requirement for a court to provide written opinions as to why a relative is not suitable as a guardian has been removed. This investigation saw numerous cases in which family members were overlooked and DPOAs were tossed out without reason. The judges are again off the hook.

3) Certification by the national Guardianship Association is simply a matter of paying a $375 fee for a multiple choice exam which a Rhesus Monkey could pass.

4) The requirement that a judge sign an attestation that an accounting filed by a guardian has been reviewed and meets the fiduciary standard has been watered down to “guardian required to file accounting when they manage property of the ward.” The majority of them already do. However, as our investigation noted, there were problems such as over billing, missing money etc.

5) Emergency petitions for guardianship to require a full hearing with the ward present has been removed. Now the language simply states that such petitions can only be filed in cases that “pose a danger of imminent and substantial harm.” Since guardianship petitions are rarely filed with accompanying medical evidence, this language is not only ambiguous but utterly worthless.

6) Similarly worthless is a “Family Rights Form” since probate judges do not follow Michigan statute anyway and attorneys are reluctant to represent families challenging a guardianship. Note that such rights are no longer being “developed.”

7) The language that a guardian’s removal of a ward from their home has been enhanced to include “in a non-emergency situation.” With no accountability, a guardian could still declare that such a removal is an emergency as the ward’s money has run out and the sale is required for long term care (as they already do) or that the home is unlivable – again, something they already do without proof. Also the appraisal requirement is gone which would still allow a guardian to undersell a ward’s home.

Clearly, the Michigan Guardianship and Probate Judges Associations exerted no small amount of influence here just as they did with the 1998 and 2005 Task Forces. This legislation is still in the early stages. Who knows what it will look like if and when it is passed?

Is this enough? Feel free to weigh in. If you are going to share, please be sure to cut and paste the commentary.

The Underground Advocate: What was suppose to happen (Initiatives) and what THAT final outcome was. What a waste of everyone’s precious time and the lives of many, many unfortunate, vulnerable people and the families that love them. This absolutely INCLUDES ALL VULNERABLE PEOPLE, such as those who are severely, multiply-disabled who are remain segregated and isolated within group homes and nursing homes. Anyone over 18 years of age. This isn’t about just the elderly. The neglect and abuse are even bigger than that. Talk is cheap and actions speak louder than words.

Michigan’s AG is putting on a politically-motivated dog and pony show – at the expense of the most vulnerable in the State of Michigan. Sadly and horrendously this is happening NOW all over our country (the elderly and disabled being kidnapped and victimized) and WHY the mainstream media has not picked up on this is puzzling and questionable. Think about that one. I know that I do every single day.

My next post will be all about Emily from an earlier post (Her Name is Emily). Emily’s struggle has gotten more desperate, twisted and warped – as to why she is languishing and deteriorating in a nursing home in Michigan.

Stay tuned. Buckle up ’cause it’s gonna be a bumpy ride!

Standard