Bill addresses decision-making for Ohioans with developmental disabilities

by: Ava Boldizar

COLUMBUS, Ohio (WCMH) – A bill in the Ohio Statehouse seeks to establish a presumption that all adults with developmental disabilities are capable of making their own decisions unless otherwise determined by a court. 

Senate Bill 35, sponsored by Sens. Michele Reynolds (R-Franklin County) and Jerry Cirino (R-Kirtland), was introduced in January. Along with declaring that adults with developmental disabilities should be presumed capable of managing their affairs, the bill would legally establish a “less restrictive” alternative to guardianship, called “supported decision making” (SDM), according to Reynolds. 

SDM allows individuals with developmental disabilities to retain their legal decision making authority while receiving support from chosen advisers who can help them understand, make and communicate their decisions. The bill would allow the advisors to be formally chosen through a written plan, or chosen informally.

In a guardianship, a family member or other entity is in charge of an individual’s affairs and ultimately makes decisions for them, when a court finds that person is incapable of making their own decisions due to a mental disability, according to the nonprofit Disability Rights Ohio.

“This legislation addresses a significant need in our current system,” Reynolds said at the bill’s first hearing in February. “Many adults with developmental disabilities find that full guardianship is more restrictive than necessary, while complete independence may not provide adequate support.”

Under the bill, entering into a SDM plan could not be used as grounds for a court to find that an adult is incapable of managing their own affairs. Adults with developmental disabilities who use a SDM plan would be allowed to act independently of their advisors and end the plan at any time. The bill additionally clarifies that adults with developmental disabilities could not be forced into a SDM plan.

Reynolds said that the approach recognizes that “disability exists on a spectrum” and that many adults with developmental disabilities are capable of making their own decisions. Twenty-three states have enacted similar legislation, according to the lawmakers.

“Supported decision making protects adults with developmental disabilities from exploitation because they maintain control over their own lives and decisions,” Cirino said.

If the bill were to pass, the Ohio Department of Developmental Disabilities would develop example SDM plans and educational materials. 

The bill had its second hearing earlier this month, where 13 entities testified in support of the legislation, including the Down Syndrome Association of Central Ohio and the Ohio Association of County Boards of Developmental Disabilities (OACB).

“Unfortunately, in many instances, guardianship represents an all-or-nothing decision for the courts to make when they are asked to balance a person’s health and safety with their ability to make decisions about their own future,” said Jake Dowling, a legislative affairs manager with OACB. “Supported decision making offers a middle path that preserves both.”

Greg Carter, the parent and legal guardian of an adult with developmental disabilities, told NBC4 he questions how the legislation would affect those currently under a guardianship arrangement.

“A parent who has been a part of their child’s life all along should not have to jump through any hoops to continue in the role of decision maker for their loved one simply because the calendar turns a page,” Carter said. “I question the motivation and need for a [policy] such as this.”

While a hearing for opponent testimony has not yet been held for the legislation, some critics of the concept have come out against a recently introduced budget bill including language that would codify SDM in Ohio law.

Caroline Lahrmann, an Ohio mother, testified against the budget bill (HB 96) saying those with developmental disabilities can already have friends and family assist them with decision making without new legislation. Harris Capps, a parent and legal guardian, echoed the same sentiment, calling sections of the bill addressing SDM “unnecessary” and “redundant.”

“SDM as policy could result in a degradation of Ohio’s guardianship system while providing more opportunities for frivolous lawsuits,” Capps said.

Current Ohio law requires those with developmental disabilities to be able to manage their financial affairs if they are able, participate in decisions that affect their lives, and select a parent or advocate to act on their behalf.

Cirino introduced a similar bill in the last General Assembly that did not pass before the end of the legislative session. SB 35 was assigned to the Senate Judiciary Committee and currently has one Republican cosponsor. 

Full Article & Source:
Bill addresses decision-making for Ohioans with developmental disabilities

There's 1 Thing No One Seems To Be Talking About Regarding Gene Hackman's Death

by Shauna Sweeney

Gene Hackman was found dead in his home on Feb. 26. Vera Anderson via Getty Images

When the news broke about the deaths of Gene Hackman and his wife, Betsy Arakawa, my stomach dropped. It’s a deeply tragic story in and of itself, but as more and more information was released to the public, there was one thing no one seemed to be talking about: This situation is every family caregiver’s nightmare come to life.

Hackman, 95, and reportedly diagnosed with advanced Alzheimer’s, was found dead in his Santa Fe home seven days after Arakawa’s unexpected passing. The official cause was heart failure, but the reality is much more heartbreaking — he likely died because the person keeping him safe was suddenly no longer there.

Authorities suspect he may not have even understood Arakawa was gone, leaving him alone without essential care, medication, or even basic necessities for at least a week.

This isn’t just a devastating celebrity story. The truth is, this could happen to anyone currently caring for a loved one’s basic needs. This is especially true for my family.

When my father was diagnosed with early-onset Alzheimer’s, I was in my early 30s, building a career and living thousands of miles away from him. Overnight, I became his caregiver, but I wasn’t ready. The first days and months were pretty rough. I had no idea what I was doing. But I also knew that no one was going to be as motivated or committed to taking great care of him as I was.

There are millions of us out there in this position. We’re not experts — we’re family, friends and neighbors. And we’ll move mountains to ensure our loved ones get the best possible care.

At first, I failed spectacularly, missing bills, missing important deadlines, even prescriptions, while unused subscriptions stacked up. Eventually my dad and I found a rhythm. I built systems to start to bring some order back, though any family caregiver will tell you not to bother trying to get everything in order. It’s just not going to happen. We found ways to cushion the pitfalls. I got smarter. I set up daily FaceTime check-ins with my dad, hired professional caregivers, created digital records of his medications and medical contacts, and installed smart home devices to monitor his safety. I even started regularly monitoring the weather where he lives to know if there could be an emergency.

But despite all these measures, I still live with one terrifying question: What if I’m suddenly out of the picture?

A few months ago, my fear became dangerously close to reality. I was sitting at a red light when I got rear-ended — hard. My seat back collapsed, I was thrown forward, and the trunk of my car crumpled like an accordion. As I sat in a daze in the back of an ambulance getting checked out, my first coherent thought wasn’t about me — it was of my dad.

I’ve been taking care of my father for 13 years. I’m still the one who makes sure nothing falls through the cracks. It’s my role to navigate the ER, where he sometimes ends up, to ensure he’s seen on time and discharged before a shift change. I am the one on the phone pleading to get an appointment with a dermatologist to get that rash on his cheek looked at tomorrow, not six months from now. Yes, it turned out to be cancer, and the effort was worth it.

I have safeguards in place. There are people who help. But if I were to disappear — permanently — would they know everything I know? Would they fight for him the way I do? My dad’s situation is constantly changing due to his Alzheimer’s. Could someone else really step in? For me and too many others, the answer is no.

On most days, I like to think of myself as superhuman — strong enough to be a good mom, a good boss and a good daughter. Yet, I know I am one accident, one diagnosis, one natural disaster away from our house of cards collapsing. Each day, I face knowing just how fragile the system is and how close we live to a crisis.

This fear is not mine alone. More than 54 million Americans — mostly unpaid and untrained — juggle caregiving responsibilities every day alongside their own personal and professional lives. By 2030, when every baby boomer will be 65 or older, that number will skyrocket. And yet, most caregiving in this country happens in a fragile, makeshift way, held together by love and hope.

For the majority of people, their approach lacks structure, backup plans, or a system of what to do in an emergency. The Hackman-Arakawa tragedy is not an anomaly. It’s at many of our front doors.

During the Los Angeles wildfires, an elderly man and disabled son were left alone after his primary caregiver son was hospitalized the week prior. Without immediate care or anyone to step in, the two were not evacuated in time, which ultimately led to both of their deaths.

Hope is not a strategy.

Every family should have a contingency plan. Who steps in if the primary caregiver is gone? Who has access to medical records? Who knows the daily routines, the medications, the little details that keep a vulnerable person safe?

Technology can help. Smart home devices can detect movement — or the lack of it. Emergency check-in alerts can notify family if something seems off. Digital tools, like shared apps, can keep medical and financial information in one place, accessible when it’s needed most.

For me, setting up a system wasn’t just about making my dad’s care easier — it was about protecting him and others like me.

I don’t say this lightly, but if Gene Hackman had a shared emergency plan or even something as simple as an automated weekly check-in system, he might have been found much sooner. Someone could have stepped in.

We can’t afford to ignore this growing crisis within our own families. In just five years, the number of Americans needing long-term care will double. At the same time, professional help is only becoming more expensive and harder to find.

Families will bear more of the burden than ever before. We must stop treating family caregiving as an informal, individual family responsibility, and recognize it as a national priority requiring education, structured support, planning and investment. We urgently need better policies: better workplace accommodations for caregivers, financial support to ease the burden, and expanded access to professional caregiving services.

On a personal level, we need to stop pretending this can be figured out later. Later is too late.

To me, the deaths of Gene Hackman and Betsy Arakawa are a wake-up call. He was a two-time Oscar-winning legend. He had resources. He had family. But that didn’t save him.

Caregiving is a responsibility we all share — as families, as communities, and as a country. If we don’t act now, personally and systemically, the consequences will be devastating — not just for individuals but for an aging nation on the brink of crisis.

And, if you’re caring for someone you love, you’re already doing an amazing thing.

But please ask yourself: What if something happens to me first?

If you don’t have an answer, it’s time to make one.

Full Article & Source:
There's 1 Thing No One Seems To Be Talking About Regarding Gene Hackman's Death