Five days after their protest, families visit loved ones in NYS group homes

GREECE, N.Y. (WHEC) — The COVID crisis took a toll on a lot of our neighbors. It was particularly hard on families with children and siblings in group homes that were in lockdown.

At the start of this week, News10NBC showed you how the families demanded the homes open up.

On Friday, they made their first visits in four months.

Brean: "The last time you were able to see him in person was March 12. It's been a long time."

Beverly Lillie, son in a group home: "It's been a very long time."

I first met Beverly Lillie at the protest Monday outside the state Office of People with Developmental Disabilities.

The families wanted the governor to open the homes for visits.

The governor did that Tuesday.

On Wednesday, Beverly, her husband, and grandchildren showed me where her son Chris is living in Greece.

And now, five days since the protest, she's seen her son face-to-face for the first time in four months.

Beverly Lillie: "When he first came out and he looked at us he wanted to come right over and touch us and give us a hug and I had to back off, my husband and I, just a little bit, let him touch us and then back off because we didn't want him quarantined."

Beverly took these photos of her son and his dad doing a Father's Day project. The finished piece said "Dad."

Coronavirus hit the 38,000 people who live in group homes in New York.

The OPWDD says 2,473 residents got infected, and 378 died.

Sharon Messina took cell phone video and photos when she visited her brother at his group home in Fairport. Families are thankful for the change to visit, but they want the state to loosen the rules at group homes even more.

Sharon Messina, brother David is 51-years-old: "We just want a plan. We just want a safe plan for them to go back to their day programs, for them to have their physical therapy, occupational speech therapy."

Brean: "Where do you want to go from here? What changes do you want to see now?"

Beverly Lillie: "Open the doors up. Let us take him home."

"Families of people with developmental disabilities all across New York State were able to successfully visit with their loved ones in person for the first time since the start of the COVID-19 public health emergency beginning today," wrote Jennifer O'Sullivan, spokeswoman for OPWDD.

"The resumption of visitation in group homes is a very important first step in our efforts to return to a 'new normal,' and as always, our number one priority as we resume visitation is to continue to ensure the health and safety of the people we support."

OPWDD says occupational and physical therapy was done through Zoom meetings, and the office is looking into safe ways to do that work in person.

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Five days after their protest, families visit loved ones in NYS group homes

Is legal guardianship necessary for adults with developmental disabilities?

Adele Barlow clearly recalls her brother Craig’s 18th birthday. It was over four decades ago, but the shock of learning that he’d become a legal adult — with all the rights and responsibilities it comes with — stays with her to this day. Craig has Down syndrome, but in New Jersey and across the United States, 18 is the age all individuals, regardless of developmental disability, earn independent decision-making rights.

“My mother, in her will, designated our older sister to be his legal guardian. She also specified that she wanted him to spend equal amounts of time with all of his other brothers and sisters,” Barlow said.

Barlow’s parents filed for the guardianship, but when Barlow’s mother died the process got messy. Craig wanted to live with Barlow and her husband. Her sister, the designated guardian, contested it.

“We had a three-day trial and the judge ruled that she was going to abide by my mother’s will,” she said. “And I knew that was wrong. There was just so many reasons why she shouldn’t do that.”

Barlow learned a little known fact: wills don’t allow for the transfer of legal custody, they only account for the preference. She eventually won the guardianship battle. Though she admits her situation was highly complicated, it’s a scenario not unlike many others playing out for families of the developmentally disabled across the state. She says many don’t learn of the need to file for legal guardianship until there’s a crisis.

“If you want to make decisions for this person, any decision, I’ve had to show my guardianship papers,” Barlow said.

Paul Aronsohn says the issue to designate legal guardianship is one of the top concerns keeping parents and caregivers of the developmentally disabled up at night.

“That should be part of the transition conversation because parents and families need to be prepared by the time a child turns 18 — they are an independent adult,” said Aronsohn, who serves as state ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families.

Many spend years and thousands of dollars on lawyers to cut through the state’s red tape. Aronsohn says it’s all unnecessary.

“We need to do a better job explaining to families that there are other alternatives, too. It doesn’t have to be general guardianship. There can be supportive decision making, that there can be limited guardianships,” he said.

In New Jersey guardianship is a court-approved legal relationship between a competent adult and a minor child, or an adult declared legally incompetent. Once the guardian is appointed by superior court, only the court can modify or change the order. As the philosophy of inclusion for developmentally disabled adults has evolved, so too have the options surrounding this relationship.

“Increasingly, there are alternatives to guardianship which completely deprive somebody of their right to make decisions on their own behalf,” said Deborah Spitalnik, founding executive director of the Boggs Center on Developmental Disabilities.

The Boggs Center is New Jersey’s federally designated University Center for Excellence in Developmental Disabilities and part of Rutgers Robert Wood Johnson Medical School. The organization’s sole mission is to educate students and the community about topics like this.

“What we’re trying to infuse through the teaching we do, through programs, is the idea of supported decision making — that people can be supported in various ways to make the decisions that affect their lives,” she said.

According to Spitalnik, if put in the wrong hands, full legal guardianship of an intellectually or developmentally disabled individual has potential for abuse. And is only necessary, as in Craig’s case, when the person is unable to care for their basic needs, finances or medical issues.

“There’s a need for tremendous amounts of education about what peoples’ legal rights are and to make sure that people who need support and decision making have that support, that families have standing, but that we do it in a way that’s more balanced, more nuanced, in not making automatic assumptions about what peoples’ capacities are for decision making,” said Spitalnik.

Limited guardianship, for example, covers decision-making around where to live, go to school, handle money, legal and medical choices. It’s good for those who are capable of making some, but not all decisions. Power of Attorney holds similar status, but the individual has to understand, on a basic level, they’re appointing someone else to make choices on their behalf. A lesser-known option is the POLST, physician orders for life-sustaining treatment, used when the person is nearing the end of life.

While advocates agree, people placed in guardianship can be considered vulnerable, there are still many instances where it’s necessary and families need to be ready.

“If you went to the doctor office and they start asking you questions and you can’t speak for yourself, and they want you to go get a medical procedure that’s emergent and you say nothing, yu gum up the entire process because in this world liability is critical. And being clear on who to go to for the decisions can make the difference, just like getting lab work in diagnostics, and the care delivery can be delayed, bad decisions can be made,” said Steven Cook, executive director of The Arc Mercer.

The ARC Mercer is one of the only community-based services for people with special needs and developmental disabilities in Central Jersey. All of the doctors and medical specialists are highly trained in care giving and spotting legal gaps.

“I’ll go to the hospital, I’ll meet with the nurses as soon as they go to the emergency room. No matter where they go, I’ll be there, the staff will be there. So if we can explain to them who they are, what they can understand, what sets them off, how to redirect them, and everything else that they need to know to make it easier on both staff and the consumer,” said Carol Bastian, a registered nurse at The Arc Mercer.

“We know who the guardians are when we take them in. And I think from a behavioral perspective, we work really well with individuals with developmental disabilities to try and make sure they’re making the right decisions. But our model verses other models where maybe a doctor who doesn’t have as much experience with special needs and is seeing someone because they’re local and available, that process ther’re not comfortable with or they’re not even aware of,” said Cook.

Advocates say families should regularly revisit the conversation, especially as circumstance change, individuals age, and mental and health capacities decline.

“God forbid something really awful happens medically and decisions need to be made about feeding tubes or not feeding tubes, you definitely have to have legal authority otherwise the state can step in and say no you can’t terminate this person’s life, or you have to put that feeding tube in, which might not be the family’s choice,” Barlow said.

Adding, that authority shouldn’t be taken lightly, because advocates say more often than not it’s the guardians who get so much more out of giving.

“Aging and the Unknown: Adults with Developmental Disabilities” is a four-part series that dives into the complexities and challenges for those aging with intellectual and developmental disabilities.

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Is legal guardianship necessary for adults with developmental disabilities?

My Son With a Disability Deserves the Same Opportunities as Everyone

Carol and Jacob Glazer in New York City in August 2015          

Our society should tell people with disabilities they can work and live equally

Twenty four years ago my son, Jacob, was born with hydrocephalus, or water on the brain. After several surgeries, doctors told us Jacob would be living with both physical and intellectual disabilities. They also told us not to expect much of Jacob in terms of his ability to participate in civic life, community life and in work. And they plunged us into what I now call the “The Tyranny of Low Expectations.”

All these years later when people speak to Jacob, they still infantilize him, speaking slowly, avoiding big words, as if he’s a toddler. It may not seem like a big deal, but for people with disabilities and their families, it is among the largest challenges we face. Like Jacob, it starts early in life for someone born with a disability, or after acquiring a disability for those who do so later in life. The bar on expectations for that person is often set so low by doctors, teachers, friends and even families that the person with a disability lives with artificially low ceilings.

The reasons for the tyranny of low expectations are rooted in our societal approach to disability, which has historically been viewed as a problem to be fixed (and in many cases feared or isolated), versus a natural part of the human condition that each of us is likely to encounter in our lives. In the past, people with intellectual disabilities were sent away from their families to institutions, where they would not be threats to public safety. I shudder when I think how, if Jacob had been born only 20 years earlier, he’d likely have been taken away from me.

We’ve also viewed disability as a problem whose responsibility to find solutions rests with the individual, not with the community or our collective society. The passage of the Americans with Disabilities Act 26 years ago this week effectively declared that people with disabilities had a right to participate in all aspects of life, in their community and the workplace. And our society—our builders, our bosses and our brethren—has to provide reasonable accommodations to enable people with disabilities to participate.

But we have not yet raised that low-set bar on expectations that means most Americans with a disability receive a continuous flood of signals—some intentional, some not—that tell us that we cannot really expect to work, or learn or participate equally.

How do these signals manifest themselves? As children, while the special education system teaches independent living or “life skills” (like cooking, personal hygiene and travel training), far too little attention is given to skills that can be used in the workforce. It’s no wonder then that only about one in five working-age Americans with disabilities is employed. The public benefits system—despite efforts at reform—reinforces the expectation that people with disabilities aren’t expected to work; and an outdated statute from 1938 means that people with disabilities can still be paid less than minimum wage to perform menial tasks in a segregated work setting. Proposed new federal legislation aims to remedy that problem, but it has yet to pass.

Every parent hopes that his or her child will become independent, contributing members of their communities, leading full and productive lives, using and being rewarded for their full talents and abilities. We set expectations for them and they rise to the occasion—but we must be mindful of the expectations that we are instilling.

Those who set the early expectations for people with disabilities—parents, school administrators, employers and neighbors—usually have the best of intentions. Nevertheless, many unwittingly engage in the tyranny of low expectations, seeing deficits, not strengths. Disability, not ability. And people with disabilities pick up those messages. When the world doesn’t expect much of you, it’s hard to expect much of yourself. It’s hard to believe in yourself when others don’t. I always tried to hold the bar high for Jacob—and still do—and today he proudly works a part-time job where he gets a paycheck and feels valued for his work.

Those of us with a personal experience of disability know that people with disabilities possess unique problem-solving skills, tenacity, resilience and creativity. Employers must understand the benefits of a diverse society that uses the talents of its citizens to full advantage. We must change attitudes and see strengths—not limitations. We must convert pity to high expectations and help corporate America to recognize promising talent.

More than ever before, people with disabilities are present throughout American society—carrying on our daily lives as workers, consumers, students, neighbors and volunteers—and contributing greatly to our national and community life. But America still has a long way to go to close the gaps in levels of participation between people with and without disabilities. We can start by raising our expectations.

 
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My Son With a Disability Deserves the Same Opportunities as Everyone

A dream becomes a village

Friends and supporters of The Loveland Center celebrated the realization of a dream Monday, with the public unveiling of the Nancy Detert Residences at Loveland Village.

The first facility of its kind in Florida,  the 42-unit apartment complex will provide affordable, independent living for adults with developmental disabilities, many of whom are clients of Loveland's services.

“I'm so close to tears and full of goosebumps right now, when I think of all the number of people who have given to this and the importance of this cause to people with developmental disabilities and their parents and our community,” said Jim Woods, who spearheaded the local fundraising campaign that raised $4.3 million. “It's awesome, I feel so blessed.”

The $12.1 million residential complex was envisioned in 2006 by Carl Penxa, the former president and CEO at Loveland, who retired earlier this year.

“Affordable housing money is really hard to get and affordable housing money for a project nobody's ever seen before is doubly hard to get,” said state Sen. Nancy Detert, who shepherded legislation through the Legislature to allow for an apartment complex such as Loveland Village and secured state funding for its construction.

Penxa's goal is to provide a long-term housing option for developmentally disabled adults who in some cases face homelessness when they outlive their parents.

“This is a drop in the bucket for what needs to be done,” said Penxa, who estimated that in the state some 17,000 people with developmental disabilities are living with parents age 70 and older. “We don't want to see people with developmental disabilities end up homeless.”

Loveland Village is a pilot project, built to Universal Design standards for accessibility. That includes doorways wider than Americans with Disabilities Act standards and wheelchair-accessible showers in every bathroom.

Daniela Koci, president and CEO of Loveland, said the apartments also have appliances with stoves that have burner knobs on the front and refrigerators with freezers on the bottom, so a person in a wheelchair can have better access.

Kris Chynoweth, 35, of North Port, noted all that with approval.

“So far, good,” said Chynoweth, who easily navigated his wheelchair through a one-bedroom and three-bedroom model. “The bathrooms especially, they really did the bathrooms good.”

He had an interview Monday afternoon regarding his application for a one-bedroom apartment.

At least 66 adults with developmental disabilities can live in the complex, which has a mix of one-, two-, three- and four-bedroom units, for an occupancy of 94. By law, 80 percent of those residents must receive services from Loveland, while the other 20 percent can be live-in aides or friends of the program, like Chynoweth.

Rents are capped at 35 percent of a person's income, with the rest of the rent subsidized by HUD Section 8 certificates, obtained in partnership with the Sarasota County Housing Authority.

In the case of Loveland clients — the center serves about 150 people — that income may come from Creative Hearts, a social enterprise selling hand-made jewelry, accessories and one-of-a-kind mosaics.

Or, they could be involved with another Loveland enterprise, the Hearty Kitchen Academy, which will take advantage of a new commercial kitchen in Loveland Village to teach marketable cooking skills and possibly start a Loveland-based catering business.

People will start moving into Loveland Village June 1, Koci said. Loveland recently purchased another eight acres adjacent to its current campus with an eye toward building more residences.

“It shows what a great community can do when there's a need and certainly coming together to make a project great,” Penxa said. “What's even going to be greater is what goes on inside the apartments and inside this whole village.

“People with developmental disabilities can actually live the life they want to live, the life that they choose and be around the people that they want to be around and go out in the community and work and have a great place to live.”

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A dream becomes a village