DOGS AND CATS WALKWAY AND SCULPTURE GARDENS

MAURICE A, FERRÉ PARK DOWNTOWN MIAMI

Earlier this month, work took me to Cali Colombia — where I toured colorful public art of cats at Parque del Gato on Rio Cali.

Back in Miami, I visited the Dogs and Cats walkway on Biscayne Bay, inspired by Cali.

The wheelchair-accessible free public art is in Maurice Ferre Park near the Frost Science and Perez Art museums.

The downtown Miami exhibit was packed with people when I visited on a breezy Sunday morning.

My favorite is the Siamese Cat Michi by artist Lucia Morales.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS 

“Rehabilitation stays have decreased so dramatically over the years I’ve been involved in the field, and it can be so difficult for people to get all of the information they need in such a short time,” Jane Wierbicky says.

“It’s very gratifying to talk with people to help them drill down to the information they need when they need it and hopefully feel supported and less overwhelmed.”

“This is why the Resource Center is here: to fight for people and give them the support they need — on a personal and professional level — to attain the best quality of life possible,” says Fertig.

NATURE-BASED SOLUTIONS

 FROM THE HEART OF MIAMI TO THE OBSERVANCE OF EARTH DAY

I'm incredibly proud to see my friend and colleague Aida Curtis' work profiled in this story of national importance.

I covered her nature-based solutions for On Common Ground magazine in April 2022.

I am honored to have collaborated with Aida on some writing and marketing projects over the years.

Curtis + Rogers Studio was practicing top drawer resiliency and sustainability before those words became part of our common vocabulary.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

At Shepherd Center, respiratory therapists went to work trying to wean Chris Dunn off the ventilator and strengthen his voice, while physical and occupational therapists attempted to undo the damage a year of lying in the ICU had done.

The team helped Chris build up the lung capacity to only need the vent at night. He was able to go fishing.

After four months, Chris returned to Maine.

He continues to fight the system to receive maximum benefits, while his mother serves as his primary caregiver.

“I don’t know that I would have been able to make things happen without United Spinal Association,” Carol says.

“I was getting tired.

I wasn’t going to give up, but they came in and propped me up and gave me some courage and some encouragement to keep going.

They pointed me in some right directions and stood behind me, and that’s all I needed to cross that finish line.”

 

 

Disability Inclusion is BIG Business

 PROUD TO COLLABORATE WITH GLOBAL DISABILITY INCLUSION INC.

This is worth investing a couple minutes to read.

It's about how disability inclusion is NOT feel good charity -- it's big business to the tune of $400 billion!

https://www.globaldisabilityinclusion.com/post/disability-inclusion-is-big-business

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Working together, Carol Dunn and the Resource Center team enlisted Disability Rights Maine, state legislators and federal representatives and held weekly calls with hospital staff and the state’s Medicaid program.

Ultimately, their advocacy got Chris Dunn into Shepherd Center in Atlanta — one of the nation’s premier SCI rehab centers.

“What it came to down to, up in Maine, was a hospital administration that looked at the injury level he had as not being any kind of quality of life.

So they denied him care that would have given him quality of life,” says Resource Center director Bill Fertig.

“Here is a guy with a very, very significant disability.

But through it all, he has almost universally maintained a strong perspective.

He has taken all that came to him, and he’s happy.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Jane Wierbicky fielded the question and emailed Dunn’s mom Carol the next day.

That started a partnernship between the Dunns and United Spinal that eventually got Chris back to living his life.

Dunn relied on a ventilator, pacemaker and feeding tube. His complications were challenging, but Wierbicky was determined to help.

“It’s always shocking to me when we see cases where that doesn’t happen,” she says.

“It became clear to me through this case that people living in rural states that don’t have dedicated spinal cord injury programs and those who are on ventilators are in an especially vulnerable position.

All Carol ever wanted was for him to be evaluated by people who understand his condition.

That seemed like a very reasonable goal.” 

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Chris Dunn survived a diving accident in July 2018 that left him paralyzed, on a ventilator and mostly blind.

A father and concrete worker, Dunn spent a year in a Maine ICU, fighting for his right to rehab and get back to living his life.

“I’m pretty sure they just wanted to kill me,” he said in a 2019 interview.

Dunn’s family was repeatedly told there was nothing more that could be done for him and, even though he was in his early 40s, they should put him in hospice to die.

After seven months of reaching out to hospitals and rehab centers all over the country and receiving nothing but rejections, Chris’ mom, Carol, filled out the online form to join United Spinal Association, writing: “We are desperate. We need help, please.”

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Bill Fertig and his team note that the best success stories are when the person’s issue is resolved, and they are given the tools to better advocate for themselves.

“It’s not that we do it all for the person in a vacuum — we make them part of the team, let them know they are on the right track.

We give them factual, current information to base their appeals on,” he said.

“That empowers them to go further and be more successful.”

BROKEN, OBSTRUCTED AND MISSING SIDEWALKS

FORCE WHEELCHAIR USERS INTO DANGEROUS STREETS – JUST TO MAINTAIN MOBILITY IN THEIR OWN HOME COMMUNITIES

When you see a person with a disability riding their assistive mobility device in the street, it isn’t because they want to be there.

It’s because the sidewalk is broken, obstructed or missing.

So they risk their lives to get to places.

They would rather risk death in dangerous traffic than die a thousand slow deaths stuck at home when they have thousands of talents to share with their community.

Cities that neglect sidewalks abuse and discriminate against wheelchair users.

This is on Esplanade near Broad in New Orleans, but lack of safe sidewalks plagues all cities.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

 “Hearing that message from someone living with a spinal cord injury can make a big difference,” says José Hernandez, a Resource Center information specialist.

    With 26 years of life as a C5 quadriplegic under his belt, Hernandez brings a deep blend of lived and professional experience to his work.

   “I take pride in being able to relate with callers and emailers on a deeper level and going beyond what the textbook or doctors may tell them.”

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Longtime Resource Center specialist Daniela Castagnino says responding to inquiries is as much about making personal connections as solving the immediate issue at hand.

    “When you answer the phone and can tell they are very stressed and upset, and you’re empathizing, and you are familiar with the issue, you can almost sense them start to see that things are going to be OK,” says Castagnino, a quadriplegic.

    “Having a positive effect on people — helping people who are family members of people with new injuries — you can transmit to them the idea you’re not alone.

    It will get better.

    And you will get through this. There’s a whole and rewarding life that’s available.”

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

“We’re a collaborative group within our Resource Center, each with our own strengths, knowledge and experiences,” says Jane Wierbicky.

“Together, we truly aim to provide hope, direction and much-needed information to help people get back to doing the things they love.”

She’s an information specialist with over 35 years of experience working as a nurse exclusively in the field of spinal cord injury and related disabilities.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Whether the request for assistance comes by email or phone, Resource Center team members try to call the person back to get the full details so they can deliver the proper resources.

Resources range from help finding personal care attendants, transportation, housing and home modifications to advocacy in dealing with insurance companies and medical facilities.

In addition to responding to inquiries and member problems, the team receives between 200 and 300 new member applications with embedded member questions every month.

Every application gets assigned, read and responded to quickly and thoroughly.

“We go above and beyond to make sure that everyone who reaches out to us gets our full attention and any resources or help they may need,” says David Heard.

He’s an information specialist who also serves as United Spinal’s membership coordinator.

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Bill Fertig, the Resource Center team’s director, served 25 years as a municipal police officer and training sergeant before an off-duty motorcycle accident resulted in paraplegia in 1999.

He joined the Resource Center in 2005 and has since worked to expand its offerings and hone its services. He takes pride in personalized, customized and localized assistance.

“Our six information specialists have a combined 100 years of experience living with SCI and 68 years working as information specialists,” he says.

“They take a great deal of pride in providing timely, helpful guidance to others dealing with the many complexities of living with SCI.”

UNITED SPINAL’S RESOURCE CENTER

TACKLES TOUGH QUESTIONS

Imagine the ultimate help desk for spinal cord injury — a magical place where trained, knowledgeable experts provide the resources and information to resolve all your questions and help you get back to living the life you desire.

Now, what if I told you that actually existed, and you could access it for free?

While it doesn’t use magic and has no actual physical location, the United Spinal Resource Center has been filling this need for 17 years, establishing itself as the premier destination for all SCI/D inquiries and needs.

The team consists of six professionals — four who live with spinal cord injuries, one registered nurse and one social worker.

THE CITY OF MIAMI ALWAYS ALLOWS ABLEIST DESIGN

WHEELCHAIR USERS TREATED LIKE SECOND CLASS CITIZENS

This is what happens when cities devalue people with disabilities by allowing brand new buildings with steps at main entrance and ramps segregated.

Trash cans block wheelchair access.

This is on the Coconut Grove waterfront.

Design must support dignity and inclusion.

LISBON, PORTUGAL

THE HILLY CITY’S TRANSIT INCLUDES FUNICULARS AND ELEVATORS 

Ascensor da Bica is a funicular in Misericórdia, Lisbon, Portugal.

It connects Rua de São Paulo with Calçada do Combro/Rua do Loreto.

Hope to return to Lisboa this year.

LISBON, PORTUGAL

 AZULEJOS

Beautiful azulejos (blue tiles) decorate facades throughout Portugal. 

These tell a story on a building in the central Lisbon neighborhood of Santa Maria Maior.

LISBON, PORTUGAL

ELEVADOR DE SANTA JUSTA

Elevador de Santa Justa connects downtown Baixa to the upper Carmo Convent by a passageway. 

Tourists wait as long as an hour to pay to ride the lift up to panoramic views from the observation deck.

LISBON, PORTUGAL

HISTORIC PRESERVATION + WHEELCHAIR-ACCESSIBLE ALTERNATE

As a huge supporter of public transit, I’m thrilled that the historic trams of Lisbon are the most iconic symbol of the city. 

For the record, they are not wheelchair accessible. 

But accessible mini buses mirror the route.

LISBON, PORTUGAL

 JARDIM LISBOA ANTIGA

The magical late afternoon September sun reaches down to embrace one of Lisbon’s many tranquil public parks.

This is the tranquil Jardim Lisboa Antiga, a garden on Rua das Francesinhas and Calçada da Estrela.

LISBON, PORTUGAL

 CIDADE DOS MIRADOUROS

Sunset Lisbon Portugal. 

No edits, pure light and composition. 

View from Miradouro da Senhora do Monte Graca.

HUMBLED TO WORK WITH PBS DIRECTOR

ON DISABILITY VISIBILITY STORYTELLING

Humbled to work with PBS director + film crew on documentary about the late disability inclusion leader Mark Bookman.

I was interviewed for an hour today about Universal Design and my thoughts on the Americans with Disabilities Act that turns 33 this year.

It was gratifying to work with Emmy winning Director Ron Small.

He produced and directed I Danced for the Angel of Death - The Dr. Edith Eva Eger Story.

My work with him is airing this year.

I discussed the groundbreaking Universal Design course I created for graduate and undergraduate students at the University of Miami School of Architecture during my PBS hour plus interview.

The CDC has documented that one in four adults has some kind of disability.

Design for all is mainstream.

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Last year, United Spinal Association government relations and advocacy staff pushed strongly for passage of the ABLE Age Adjustment Act, along with the National Association of State Treasurers and the disability community at large. They met with key members of Congress to answer questions and secure their support. United Spinal advocates included Shelley Jaspering of Ames, Iowa, who testified before the U.S. Senate Committee on Aging in support of the bill. 

The ABLE National Resource Center has a helpful list  with details and contact information for all the state programs. 

https://www.ablenrc.org/select-a-state-program/#:~:text=Choose%20the%20program%20that's%20right,outside%20residents%20into%20their%20program

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Even if you don’t have the financial resources to save for big-ticket items, ABLE accounts can still be a useful option. 

Gayle Stanford says that family and friends can make gift contributions into your ABLE account. 

Similarly, if you ever raise money through crowdsourcing, you could put those funds into an ABLE account to save or grow them further.  

Presently, 46 states and the District of Columbia offer ABLE accounts to their residents. 

If you live in one of the four states that don’t have ABLE programs — Idaho, North Dakota, South Dakota and Wisconsin — you can still open an account through any of the 30 states that have programs available to outside residents.

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Gayle Stanford, a wheelchair user with cerebral palsy, works part time at Columbus Speech and Hearing in Columbus, Ohio. She’s on Medicare and receives small Social Security Disability Insurance payments. 

Stanford says her medical expenses — including things not covered or only partially covered by Medicare — were growing and crowding out what she had left to make house payments. 

“I pulled about $45,000 out of my ABLE account to pay my house off. 

That way, I could focus my earnings on paying medical expenses and not worry about falling behind on the mortgage,” she says. 

“I still have about $20,000 left in my ABLE account. I have about one-third in high risk, one-third in medium risk and one-third in low-risk growth.” 

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

Valerie Rose Crisci created the website Respect the Vest to raise awareness of service dogs, and would like to create a nonprofit to do the same. 

“Trying to save the money for how much it costs to start a nonprofit is one of the reasons I opened my ABLE account,” she says. 

“Without having a CalABLE account, I had to worry about saving money — because if I were to save money, I could lose my government benefits. With a CalABLE account, I am able to save up to $100,000 without that worry.” 

Monthly SSI benefits peak at $914 for an individual and $1,371 for a couple, barely enough for many to pay rent — let alone cover food, transportation and other daily expenses.  

On top of that, if you save more than $2,000, you risk having SSI cut off. “SSI is poverty, being constantly at the brink of ruin,” Allen says.

“ABLE is a way of supporting people with disabilities, a group that is quite chronically underserved.” 

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

As an undergraduate student at The City University of New York School of Professional Studies and a recipient of SSI, Valerie Rose Crisci finds her ABLE account is the perfect way to save wisely without losing benefits that keep her active and in school.

Crisci uses a power wheelchair due to a progressive neurodegenerative disease and is legally blind due to optic nerve atrophy.  

She has saved $1,330 with her CalABLE account.

It’s money she plans to put to good use.

“My current service dog, Cleo, is getting up there in age. Canine Partners for Life requires their recipients to donate at least $1,000, and there is the price of traveling to and staying in Pennsylvania for three weeks during team training,” she says.

“CalABLE offers a Visa card that can be used much like a typical debit card in order to spend the money that has been saved.

I plan on using this method when it’s finally time to go to Pennsylvania.”  

HOW TO MAKE THE MOST OF AN ABLE ACCOUNT

HELP AVOIDING THE BENEFITS CLIFF 

The definition of a qualified expense is quite broad.

Virtually anything that maintains or improves the health, independence and quality of life of a person with a disability is a qualified expense — so it is not limited to medical copays and home accessibility modifications. 

Dante  Allen says he uses relatively small withdrawals to pay out-of-pocket costs.

He has good insurance, but it only pays for a basic wheelchair.

To upgrade to a titanium frame, his out-of-pocket cost was about $900.

He used his ABLE account to cover it.  

PATHETIC PASEO

MISERABLE PEDESTRIAN EXPERIENCE

IN HEART OF DOWNTOWN CORAL GABLES

We hope this narrow, bumpy, crummy excuse for a paseo is a private property thing that the City of Coral Gables has no control over.

Saw a visitor almost fall from her wheelchair.

She asked if it was leftover dumped asphalt or an official path.

It seems to be an official city paseo – because it’s decorated with a huge city mural.

How can hundreds of city employees and officials walk past this every day and not see it is a tripping hazard and too narrow/bumpy to accommodate those who use wheelchairs for mobility?