When an entrance door is over 6 feet high and thick glass with no handicap access button, how does the individual with a mobility issue enter? I have visited two office doors to medical practices where five physicians provided healthcare, and there was no way for the disabled to enter if they did not have an assistant with them.

This is not only objectionable; this is illegal. When it is an entrance to a medical practice, it would seem this is even more relevant and more of a dismissal of respect for these patients.

After WWII, disabled soldiers discovered that their sidewalks, streets, and corners were inaccessible, prompting the United States to apply curb cuts. Wheelchair users had it rough before curb cuts came along; they had to locate the closest driveway, cross the street in the face of approaching traffic, and then locate the next accessible driveway to cross the street. Even though changes were initiated, not every community or every shopping center has been inclined to include cutouts in sidewalks.

The ADA laws are quite specific as to the requirements regarding doors, styles, door widths, etc., and anyone wishing to familiarize themselves with these requirements can go to the website called “ADA compliance…”

ADA Mandates

What does the ADA mandate? The numerals in front of the requirements indicate the portion of the law it addresses. Here are a few examples of what shops, practices, community centers, and other buildings need to adhere to:

Revolving Doors and Turnstiles. Revolving doors or turnstiles shall not be the only means of passage at an accessible entrance or along an accessible route. An accessible gate or door shall be provided adjacent to the turnstile or revolving door and shall be so designed as to facilitate the same use pattern.

4.13.3 Gates. Gates, including ticket gates, shall meet all applicable specifications of 4.13.

4.13.4 Double-Leaf Doorways. If doorways have two independently operated door leaves, then at least one leaf shall meet the specifications in 4.13.5 and 4.13.6. That leaf shall be an active leaf.

4.13.5 Clear Width. Doorways shall have a minimum clear opening of 32 in (815 mm) with the door open 90 degrees, measured between the face of the door and the opposite stop.

According to media reports, the MTA (Metropolitan Transit Authority) appears to issue inadequate warnings to riders to be cautious when riding the subway in New York City. Transit officials have been dealing with the aftermath of Gov. Kathy Hochul’s orders, which halted dozens of subway accessibility projects. A lawsuit will probably force the agency to address hundreds of subway platform gaps.

The complaint claims the MTA violates the city’s Human Rights Law by neglecting to eliminate “excessive” spaces between subway trains and platforms. Accessibility advocates say this makes the system “dangerous” for disabled and elderly riders. The plaintiffs filed the lawsuit in 2022.

The 2022 agreement laid out the state’s promise to upgrade 95 percent of inaccessible stations with ramps or elevators over the next few decades. Disabled subway commuters can access only 131 of the 493 stations comprising the authority’s system.

The Restrictions on Travel

According to the National Household Travel Survey (NHTS), 18.6 million Americans aged 5 and up (6.1 percent of the total population in that age bracket), 10.0 million Americans aged 18–64 (5.1 percent of the 18–64 age group), and 7.7 million Americans aged 65 and up (14.1 percent of the 65+ age group) reported having a disability that limited their ability to travel.

Individuals who reported disabilities that hindered their ability to travel disclosed the following problems:

They were less likely to be employed, live in a vehicle-owning household, and travel. They took fewer trips because of health issues and came from lower-income households. To compensate for their disabilities, they relied on others for rides, which limited their travel to daytime. They used rideshares and special transportation services like Dial-A-Ride.

However, it’s not just restrictions on travel because ADA applies to things closer to our homes, like the local library or the community center. Within the past week, I have been contacted by two individuals (one on a local Facebook page and one on my Bluesky account).

The woman on the Facebook page was reaching out to people living in her town who might help her. She lives on the upper floor of an apartment building and has mobility issues requiring the building elevator. Unfortunately, the landlord told her the elevator was being repaired and would be out of service for several weeks.

She is, as she said, “a prisoner in my home” and cannot shop, do the laundry or leave the building. The landlord had been unresponsive to her calls, as she said. The townspeople on the page offered various forms of help and directed her to the local ADA town manager.

Another woman with mobility difficulties couldn’t access the ladies’ room in the local library because she couldn’t open the door. When she indicated to library managers her need for accessibility, they informed her there was little they could do.

The town also told her they could do nothing to assist with the library door. The best solution that they offered was to prop the door open, and this, of course, raises privacy and safety issues. No one seemed to offer any help for her, and I indicated it might be helpful to look for state organizations devoted to disability issues’ resolutions. Hopefully, she will find one or more who will provide the needed aid.

Another town that had, several years ago, built a large new community center also failed to notice that both the entrance doors and the doors to the lavatories were not ADA-compliant and could not be opened without assistance.

Local officials estimated that installing a push-button door would cost $17,000 to fix the front door issue. After months of foot-dragging, they did comply and also offered a means for those with vision disabilities to access the door opener.

The work is still being considered for the lavatory doors, which have an additional impediment of a “modesty panel” directly in front of the door when it opens. This means anyone in a wheelchair has an another obstacle at the entrance.

While anyone who is able-bodied fails to appreciate the seriousness and the loss of independence as well as that of self-esteem for those with disabilities, this is still not acceptable. We must adhere to the laws and respect people’s rights.

No one wants to enter into lawsuits in order to obtain remediation of these issues, but that remains an option. Town officials should ask themselves one question: What is more expensive, fixing the door or dealing with a million-dollar lawsuit?

The post Preventing the Disabled From Entering Safely Is the Issue appeared first on Medika Life.

The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access a complex network of social services, she lives relatively independently in Johnson City, Tennessee.

“If something happens to them, I’m not certain what would happen to me, especially because I have difficulty with navigating things that require more red tape,” she said.

Johnson said she hasn’t made plans that would ensure she receives the same level of support in the future. She especially worries about being taken advantage of or being physically harmed if her family and friends can’t help her — experiences she’s had in the past.

“I like being able to know what to expect, and thinking about the future is a bit terrifying to me,” she said.

Johnson’s situation isn’t unique.

Experts say many people with intellectual and developmental disabilities do not have long-term plans for when family members lose the ability to help them access government services or care for them directly.

Families, researchers, government officials, and advocates worry that the lack of planning — combined with a social safety net that’s full of holes — has set the stage for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.

“There’s just potential for a tremendous human toll on individuals if we don’t solve this problem,” said Peter Berns, CEO of the Arc of the United States, a national disability-rights organization.

About one-quarter of adults in the U.S. live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-quarter of those caregivers are 60 or older, according to the Center on Developmental Disabilities at the University of Kansas.

But only about half of families that care for a loved one with disabilities have made plans for the future, and an even smaller portion have revisited those plans to ensure they’re up to date, said Meghan Burke, an associate professor of special education at the University of Illinois in Urbana-Champaign.

“Engaging in it once is good, right? But you can’t only engage in it once,” she said. “It’s a living document, because things change, people change, circumstances change.”

Burke’s research has found several barriers to planning for the future: financial constraints, reluctance to have hard conversations, trouble understanding government services. Creating plans for people with disabilities also is a complex process, with many questions for families to answer: What are their relatives’ health needs? What activities do they enjoy? What are their wishes? Where will they live?

Burke has firsthand experience answering those questions. Her younger brother has Down syndrome, and she expects to become his primary caregiver in the future — a situation she said is common and spreads the work of caregiving.

“This is an impending intergenerational crisis,” she said. “It’s a crisis for the aging parents, and it’s a crisis for their adult offspring with and without disabilities.”

Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations, a national caregiver advocacy organization, said the network of state and federal programs for people with disabilities can be “extremely complicated” and is full of holes. She has witnessed those gaps as she has helped her brother, who has autism, access services.

“It’s really difficult for families to plan when there isn’t a system that they can rely on,” she said.

Medicaid pays for people to receive services in home and community settings through programs that vary state to state. But Jorwic said there are long waitlists. Data collected and analyzed by KFF shows that queue is made up of hundreds of thousands of people across the country. Even when people qualify, Jorwic added, hiring someone to help can be difficult because of persistent staff shortages.

Jorwic said more federal money could shorten those waitlists and boost Medicaid reimbursements to health care providers, which could help with workforce recruitment. She blamed chronic underinvestment in Medicaid disability services for the lack of available slots and a dearth of workers to help people with disabilities.

“It’s going to be expensive, but this is four decades of funding that should have been done,” she said.

Congress recently put about $12.7 billion toward enhancing state Medicaid programs for home- and community-based services for people with disabilities, but that money will be available only through March 2025. The Build Back Better Act, which died in Congress, would have added $150 billion, and funding was left out of the Inflation Reduction Act, which became law this summer, to the disappointment of advocates.

Jeneva Stone’s family in Bethesda, Maryland, has been “flummoxed” by the long-term planning process for her 25-year-old son, Rob. He needs complex care because he has dystonia 16, a rare muscle condition that makes moving nearly impossible for him.

“No one will just sit down and tell me what is going to happen to my son,” she said. “You know, what are his options, really?”

Stone said her family has done some planning, including setting up a special needs trust to help manage Rob’s assets and an ABLE account, a type of savings account for people with disabilities. They’re also working to give Rob’s brother medical and financial power of attorney and to create a supported decision-making arrangement for Rob to make sure he has the final say in his care.

“We’re trying to put that scaffolding in place, primarily to protect Rob’s ability to make his own decisions,” she said.

Alison Barkoff is acting administrator for the Administration for Community Living, part of the U.S. Department of Health and Human Services. Her agency recently released what she called a “first ever” national plan, with hundreds of actions the public and private sectors can take to support family caregivers.

“If we don’t really think and plan, I’m concerned that we could have people ending up in institutions and other types of segregated settings that could and should be able to be supported in the community,” said Barkoff, who noted that those outcomes could violate the civil rights of people with disabilities.

She said her agency is working to address the shortages in the direct care workforce and in the supply of affordable, accessible housing for people with disabilities, as well as the lack of disability-focused training among medical professionals.

But ending up in a nursing home or other institution might not be the worst outcome for some people, said Berns, who pointed out that people with disabilities are overrepresented in jails and prisons.

Berns’ organization, the Arc of the United States, offers a planning guide and has compiled a directory of local advocates, lawyers, and support organizations to help families. Berns said that making sure people with disabilities have access to services — and the means to pay for them — is only one part of a good plan.

“It’s about social connections,” Berns said. “It’s about employment. It’s about where you live. It’s about your health care and making decisions in your life.”

Philip Woody feels as though he has prepared pretty well for his son’s future. Evan, 23, lives with his parents in Dunwoody, Georgia, and needs round-the-clock support after a fall as an infant resulted in a significant brain injury. His parents provide much of his care.

Woody said his family has been saving for years to provide for his son’s future, and Evan recently got off a Medicaid waitlist and is getting support to attend a day program for adults with disabilities. He also has an older sister in Tennessee who wants to be involved in his care.

But two big questions are plaguing Woody: Where will Evan live when he can no longer live at home? And will that setting be one where he can thrive?

“As a parent, you will take care of your child as well as you can for as long as you can,” Woody said. “But then nobody after you pass away will love them or care for them the way that you did.”

The post ‘Impending Intergenerational Crisis’: Americans With Disabilities Lack Long-Term Care Plans appeared first on Medika Life.

Perhaps the cloak of invisibility these disabilities provide may furnish a greater ability to navigate our society as they wish. Those who are dependent on wheeled or motorized rides or braces are hard to ignore, but ignore them we do.

Think about it for a moment. If you had to ring a bell each time you wanted to have someone come to open the door to a local community center, how would you feel? Oh, you’d be OK with it? Suppose no one came? How would you feel if it were the dead of winter or raining hard or the wind was blowing your coat open as you waited in vain?

What if, when you had to use the lavatory at that same center, you encountered a “courtesy” or “modesty” panel once you managed to get the first door open? Or what if you went into the handicapped stall and found yourself trapped, yelling for help, and no one came? How helpless and maybe even embarrassed would you be? You’d be OK with that, too?

Both of these situations happened to a person who serves on a local committee to respond to the needs of the town’s disabled citizens. What was the response to this individual’s situation? The group dismissed it because someone would come to open the outside door—no need for one of those expensive automatic doors where you push a large plate to open it.

And surely, the lavatory needed that modesty panel, and someone did come to help the person in need after they yelled. But help didn’t come immediately, and there was no way other than yelling to signal a need for help. They failed to see how either situation could be demeaning to someone’s self-esteem. And this is a committee that was formed to advocate for the disabled.

Non-disabled persons fail to understand the many impediments between a physically disabled person and any pursuit, be it a restaurant, a bus, a theatre, or an athletic competition. The disabled are often not considered in too many designs for buildings or transportation.

Sure, my town has installed dimples on the sloped areas at corner crossings so those with sight impairment know where to cross the street. But one local disabled woman, who used a wheelchair, was hit and killed by a car when she tried to enter a local supermarket parking lot — there was no sidewalk leading into the lot. The national supermarket chain assumed everyone on foot would enter the lot almost two blocks away, where there is a sidewalk. The disabled were never considered in the parking lot design.

Even if you had to use a walker, do you know where you’d be put in too many theatres? Yes, off to the side or in the back in a “handicapped” section. Can you say you’d be “sent to Coventry?” Go on a bus with a walker or wheelchair? It’s another time you must opt for a cab or an Uber. Buses don’t have spaces for walkers, and not many have lifts that work for wheelchairs.

Want to go birding on the weekend at a considerable nature center on the East Coast of the US? Well, don’t plan on any help from employees because the governor cut the budget to the bone, which meant no employees on weekends.

Yes, there are boardwalks for those with mobility disabilities, but if there’s a problem or a safety issue, you’d better have helpers with you. Theft may be the least of your troubles.

What about going away to a quaint bed-and-breakfast for a vacation? Everywhere you go, there must be an elevator.

I recall going to California on a vacation years ago, and we went to a Seaworld site. As we entered the walkway leading to the tanks with the orcas, a young family was walking there, too. The couple had two children, a boy, and a girl. I will never forget the young, attractive, possibly, 10-year-old girl who was wrapped in the most elaborate body brace I’d ever seen.

The couple laughed and joked with the kids, and I had to admire the strength it must have taken to get to that place in their minds, never mind to take their kids to a park like this. Sometimes, I wonder what became of her or the young girl I saw standing on a table in a rehab shop where they fitted her with Plaster of Paris and cloth for a body brace.

My visit to the shop was minor. I had to have metal shanks sewn into my shoes’ soles to help my feet heal. As I marveled at the girl’s patience and the size of the brace grow, I said a silent prayer of thanks to myself.

Once outside the shop, wearing my newly rehabbed shoes, a young boy with his mother cried out, “Look, ma, she’s crippled,” as I tried to walk down the street. His mother quickly leaned over and admonished him. The shanks broke within a week, and I had to return for a more substantial pair. The moment and the images have stayed with me still.

Yes, we live in a society that prides itself in its inclusiveness of those who have been pariahs in the past. Don’t be too proud because there’s still much work to be done.

The post When Do the Disabled Get the Respect and Services They Deserve? appeared first on Medika Life.