The power of having a diagnosis can transform your child's life. For a young girl that came to Easterseals for neuropsychological testing, her Autism Spectrum Disorder diagnosis changed everything. With reduced anxiety and stronger coping skills, she was able to attend her high school prom!
We invite all male and female veterans to join us for conversation and refreshments! No topic off limits. Gatherings are hosted at both Veterans Rally Point locations in Norwich and Rocky Hill (on CTVA campus). Click the link for more details on how to register.
Caregiving 101: A First Glance at Aging in America
It’s old news that we are growing older as a nation, but only four in ten Americans, aged 40 to 70, know that 60 to 70 percent of 65-year-olds today will require long-term care services at some point in their lives.
There are more than 45 million caregivers for older adults. These are people who need information and support to make their lives easier.
Who Needs Our Care?
We need to be aware of our changing demographics. Statistics today will quickly become personal realities -- affecting our families, friends and neighbors.
The number of people aged 85 or older—those most likely to need long-term care services is expected to increase by 74 percent between 2007 and 2030. (AARP Public Policy Institute. Across the States 2009. Profiles of Long Term Care and Independent Living.)
In the next 20 years, one in five people will be 65 or older and this population is projected to grow by more than four times as fast as the population as a whole. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008). And older adults are living longer, too.
The growing number of older adults will be trying to manage conditions like dementia, falls, diabetes, stroke and sensory losses. Thirteen percent of persons over the age of 65 have Alzheimer’s disease. (2009 Alzheimer’s Disease Facts and Figures, Washington, DC. Alzheimer’s Association.)
Older adults face an increasing need for transportation services. The average number of years a person continued to drive -- the driving expectancy -- was significantly less than overall life expectancy.
Men and women who were still driving at ages 70 to 74 were expected to drive, on average, another 11 years. But these men were expected to live about 17 more years, and the women nearly 21 more years.
This gap between driving expectancy and overall life expectancy means men in this age group who stopped driving were dependent on alternative transportation for an average of six years. For women, the gap translated into about 10 years dependence on other transportation modes. (Foley, DJ, Heimovitz HK, Guralnik JM, Brock DB, "Driving Life Expectancy of Persons Aged 70 Years and Older in the United States," 'American Journal of Public Health,' vol. 92, no. 8 pp. 1284-1289.)
Who are Our Caregivers?
Caregivers are not just professionals. You are a caregiver if you provide social or physical support to an aging relative or friend or to a person with a disability.
Family caregivers provide the overwhelming majority of long-term services in the U.S.,approximately 80 percent. (Thompson, L., Long-term care: Support for family caregivers [Issue Brief]. Washington, DC: Georgetown University, 2004 and Long-Term Care Financing Project, Long-term Care Users Range in Age and Most Do Not Live in Nursing Homes. U.S. Agency for Healthcare Research and Quality, November 8, 2000.)
The most common type of informal caregiving relationship is an adult child caring for an older parent.
1.4 million children ages eight to 18 provide care for an adult relative; 72 percent are caring for a parent or grandparent. (National Alliance for Caregiving and the United Hospital Fund, Young Caregivers in the U.S., 2005.)
The increasing number of older adults will put even more caregiving pressure on fewer middle generation adults.
As the baby boomers turn age 85 between 2030 and 2050, the age 85+ population will skyrocket by another 118 percent. (U.S. Census Bureau, Current Population Survey, Annual Social and Economic Supplement, 2008)
The current nursing home facilities are ill-equipped to handle the growing number of older adults and this population will be more dependent on family for care.
Current nursing home facilities are operating at an 88 percent capacity. (American Health Care Association, 2009).
We would rather ignore the statistics if we are not personally affected by them. But the truth is, it’s happening sooner than we think,
First baby-boomers will turn 65 in 2011. (Administration on Aging).
It’s more common than we think,
In the past 12 months, an estimated 65.7 million people in the U.S. have served as unpaid family caregivers to an adult or a child.
We don’t have the information we need to provide the best care for our loved ones;
78% of caregivers feel they need more help or information about at least one of 14 specific topics related to caregiving.
And caregiving duties will most likely fall on you or someone close to you.
Family caregivers provide about 80 percent of all long-term care services in the U.S. (Metlife Mature Market Institute, 2001).
Without the right supports and information, the current situation will affect:
Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off of a family caregiver's life. (Elissa S. Epel, et al. From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49).
Most caregivers work either full or part time while providing care (59 percent). (National Alliance for Caregiving with AARP and MetLife, 2004 in addition to their caregiving responsibilities).
Family caregivers comprise 13 percent of the workforce. In one study, 37% of human resource directors did not feel that their organizations made a real and ongoing effort to inform employees of available assistance for managing work and family responsibilities. (Wagner, D. and Neal, M. (2002). Working Caregivers: Issues, Challenges and Opportunities for the Aging Network. National Family Caregivers Support Program, Program Development Issues Briefs, Administration on Aging, DHHS. Galinsky, E. and J.T. Bond. (1998). The 1998 Business Work-Life Study. New York: Families and Work Institute).
More than half of working caregivers (57 percent) say they have to go into work late, leave early or take time off during the day to provide care. (National Alliance for Caregiving with AARP and MetLife, 2004).
For some adults with heavy caregiving responsibilities, the impact on their ability to work is significant. Some working caregivers reported having to (17 percent), shift from full-time to part-time work (10 percent), quit work entirely (6 percent), lose job benefits (5 percent), turn down a promotion (4 percent), or choose early retirement (3 percent). (National Alliance for Caregiving with AARP and MetLife, 2004).
Over the course of a caregiving “career,” family caregivers who provide intense personal care can lose as much as $659,000 in wages, pensions, and Social Security. (Dimensions of Family Caregiving: A Look Into the Future; Metlife Mature Market Institute, 2000).
And Our Economy.
American businesses lose between $11 billion and $29 billion a year in reduced productivity costs related to caregiving responsibilities. This includes workplace disruptions, scheduled and unscheduled absences, leaves of absence, reduction from full- to part-time work, early retirements, and leaving work entirely to care for a loved one. (Metropolitan Life Insurance Company, 1997).
Assess your loved one’s medical, financial and transportation needs.
Explore and discuss preferences in terms of care and living arrangements with the person you care for.
Know there are resources, services and people to help.
Can’t Travel Right Now? Here are 6 Staycation Ideas to Enjoy the Summer
Tuesday, June 7, 2022, 2:11 PM
For some people with disabilities, travel at this time is simply not feasible. From inaccessible pub…
For some people with disabilities, travel at this time is simply not feasible. From inaccessible public and private transportation to COVID spikes that put folks with pre-existing conditions at a higher risk of severe complications, many are choosing to stay home as we head into the summer months.
Staying safe at home doesn’t mean you can’t experience that vacation life you want! Below are some tips on how to create that relaxing vibe in your own home or town.
If you have a backyard, put up a baby pool and make fruity drinks: You don’t have to be a kid to enjoy an inflatable kid’s pool. Whether it’s just dipping your feet as you lounge in your wheelchair or putting on a bathing suit to go all in, you can bask in the sun as you sip your fruity beverage of choice. I’d recommend margaritas if you’re over 21, and frozen lemonade if you’re underage. Or try some of these fun drink recipes! Either way, kick back, relax, and pretend you’re poolside at a fancy beach resort.
Try cooking a new cuisine: A benefit of traveling is experiencing different cuisines from around the world – but you can still do that locally! Find a recipe online and have groceries delivered, or order from a local restaurant that delivers – or try something new in the frozen-foods section of a supermarket. It doesn’t matter how you do it, as long as you’re being adventurous! To get more into the moment, research the cuisine and the region it comes from. There are also numerous travel food shows available online like Taste the Nation on Hulu or Chef’s Table on Netflix.
Go on a Zoom date: By now, we’re all aware of the power of Zoom! Thanks to this technology, it’s pretty easy to connect with people from the comfort of your home. Some fun Zoom-date ideas are to play games together (check out Board Game Arena for online board games), watch your favorite summer movie, or share a meal.
Spa day: If you really want to relax, treat yourself to a spa day. Soak your feet in a basin of water, lie down with a warm towel over your eyes, and put on some calming music; there are free radio stations on iTunes that are perfect for meditating and creating a tranquil environment. When you’re done chilling out, lather yourself in lotion and give yourself (or ask someone to give you) a new manicure or pedicure. End your day with a warm bath or shower, and you’ll be feeling luxurious!
Read, read, read: One thing folks love to do on vacation is read, preferably on a balcony overlooking the ocean. But when you can’t get out and do that, reading at home with ambient sounds playing in the background is another option. There are a lot of free sounds you can search for on YouTube or iTunes radio – just look for “ambient sounds” on Google! If you read with audio books, that’s even better. If you can’t get outdoors at all, try reading near a window or by a light box to get some much-needed Vitamin D.
Travel virtually: The one thing that many of us miss out on in staycations is the ability to explore someplace new. But you can still see the sights at different travel destinations with Google Maps! Go to street view, and you’ll be transported to a first-person view of the city. You can then explore different areas, walk down the street, and – in some cases – go inside buildings. Some favorite places to Google travel to are Venice, The Metropolitan Museum of Art, the White House, and the Great Barrier Reef! There are also live content creators on YouTube, like the Urbanist, who take you along with them as they walk the streets of cities around the world.
What are some tips you have for the perfect staycation? Let us know in the comments!
Disability Awareness in the Classroom: Our Last Visit for This School Year
Monday, June 6, 2022, 6:52 PM
Last Thursday, two neighborhood friends drove my Seeing Eye dog Luna and me to a Chicago suburb 30 m…
Luna and I had a great day at school.
Last Thursday, two neighborhood friends drove my Seeing Eye dog Luna and me to a Chicago suburb 30 miles away to visit third graders there. We went as part of the Educating Outside the Lines Disability Awareness program. Every day that week someone with a disability came to the school to talk with students about their disability and the “helper tools” that let us do the things we like — or need — to do.
Black Lab Luna guided me to two presentations for third graders Thursday morning. At each one, I talked with the kids about being blind, what service dogs do, and how I use a talking computer to do my job moderating this blog for Easterseals.
As I readied myself for the question-and-answer part at one of the presentations , the teacher there gushed over Luna. “She’s sooooo pretty!” I took my cue, turned to the third-graders and told them I hear that a lot. “I just pretend they’re talking about me!” I laughed. After that, the questions started pouring in:
Do you cook your own food?
How do you, like make your breakfast and your cereal and stuff?
How can you eat, then?
How do you know where someone is if you can’t see them?
Did you ever get robbed because you are blind?
How do you know what earrings or necklace to wear when you’re getting dressed?
Have you ever lost your dog when you were walking?
Can you see in your dreams?
Can you swim?
What was the last thing you ever saw?
How does your dog know where you are when you go on a walk?
This is not a question, it’s a comment. You’re very pretty. And I mean you, not the dog.
How old is your dog in people years?
How can you ride a bike?
Did your dog ever run away and you didn’t know where it went?
Is it hard to know which way to go when your dog goes around a tree?
How do you swim?
How do you drive?
When you call someone, are the numbers in Braille?
Have you ever lost your dog when you were walking?
How do you get on your bed?
How does your dog know where you are when you go on a walk?
And with that, I picked up Luna’s harness, commanded, “Luna, Outside!” and the children cheered as my Seeing Eye dog guided me out of the classroom for our last visit for this school year. “Good dog, Luna!”
Airport Anxiety: The Importance of Transportation Options for People with Disabilities
Wednesday, May 18, 2022, 9:51 AM
If you’ve read my posts here on the Easterseals National blog, you know that I love sharing travel s…
We are standing outside the restaurant. I’m wearing a sundress and he’s wearing a dress shirt with dress pants and dress shoes. We are standing side-by-side with an arm around each other and smiling. It was taken after dinner for our two year anniversary.
If you’ve read my posts here on the Easterseals National blog, you know that I love sharing travel stories, especially new experiences. It feels good to step out of my comfort zone, do something different, and have it go well enough to actually want to write about it.
We typically take turns flying, but I’ve been traveling a bit more than him lately. Last winter, I flew to Houston to get away from Chicago weather and celebrate the holidays with Juan, and then I flew in April to spend a month to explore a new city to see if I could picture starting a new life there. We only see each other in-person about four times a year, and transitioning from a long distance relationship to living together is a huge step. We wanted to make sure we could live under the same roof.
I flew back to Chicago in early May, and this time rather than having someone from Juan’s family drive me to the airport, I ended up taking their paratransit service MetroLift to the airport.
Paratransit is a door-to-door service offered to people with disabilities, an alternative to taking the fixed route buses. The service area — that is, the areas of town in which paratransit will provide service to disabled passengers — is much wider in Houston than the service area covered by paratransit in Chicago, where I live now. I was a little nervous taking paratransit, but I definitely felt more comfortable taking MetroLift than I did taking Uber.
The thing is, I’m an anxious traveler by nature. Part of that is just anxiety in itself, and part of that does stem from my blindness — the constant and extra planning that goes into traveling as a blind person, needing extra assistance, and worrying about being forgotten. I am not relaxed until I am safe and sound at the gate, because in my mind, anything can go wrong before that.
I prepare mentally for what could go wrong and create a backup plan in case it does. Juan knows this about me. He is blind too, and he knows that if plan A gets derailed without a backup plan, I’ll obsess over it and start to panic. When we have to make alternative plans, he’s good about planning it all out.
So when he told me his family was going to be away in Austin (where his sister lives) for Mother’s Day weekend, I started to get nervous. Who’d drive me to the Houston airport, then? Juan calmly presented plan B in meticulous detail, and I felt okay right away.
The plan was to take MetroLift to the airport and get there early. He schedules his rides based on appointment time (that is, what time he wants to arrive) rather than pickup times, because if you schedule by appointment time, even if they have to pick you up early due to other pickups and drop-offs, you’ll still arrive when you want to arrive.
Juan also assured me he’d be coming along on my ride to the airport. He said MetroLift drivers have to hand you off to an employee, so they wouldn’t just drop us off and leave us like an Uber driver might.
So, despite the bittersweet feeling of saying goodbye after spending a whole month together, when departure day arrived, I found myself actually getting excited rather than feeling nervous. I didn’t want his mom to miss most of Mother’s Day weekend, and this seemed like it would go smoothly enough. When Juan called to verify what time our ride was coming to his apartment, he also double checked that they’d walk us into the airport. I overheard him talking to dispatch: “We’ve never done this before,” he said. “So I want to make sure my girlfriend gets assistance — she’s blind, too.”
He made sure they knew we’d both have our white canes with us. They ask this anytime you book a trip anyway, but in this case he told them so they would know who to look for when they arrived at his apartment to pick us up. “I don’t want her just stranded there at the airport ,” he said. “I want to make sure the driver is going to lead us inside.”
The call was on speaker, so I could hear the friendly dispatcher’s voice assuring Juan that yes, the driver would walk us inside, and kindly describing the process of airport drop-offs.
With my trip to the airport booked, Juan scheduled his ride back from the airport for one hour later. That way he could come inside and wait with me. We had scheduled the appointment time early enough that even as our driver took a while to figure out where to park to lead us inside (she herself had never done an airport drop-off before), I wasn’t nervous. Our driver was determined to figure it out, and we had plenty of time.
When she found where to park, she led us inside, where an employee saw us and said he’d take us to the check-in counter. After I told him I was the only one traveling, Juan added, “I’m just going to wait with her to make sure she gets help to security, and then I’ll need some assistance downstairs to catch MetroLift.”
The employees were very patient and accommodating as they led us to the counter and the driver departed. After checking in my suitcase, an airline employee handed me my boarding pass and placed me in a wheelchair to wait for assistance. Being placed in a wheelchair doesn’t bother me even though I don’t need one. It’s pretty common practice in airports and I know it bothers some people. However, it really does make the overall process of getting through security a lot faster. Then there’s this: it makes me more visible and serves as a constant reminder to them that, “Hey, I’m here and I need some assistance!” I only needed to wait about 15 minutes before someone came to assist me. “I’m going to take her to security,” she told Juan. “And sir, someone is already on their way to take you downstairs to catch MetroLift.”
He thanked her for assisting me and for accommodating him as well, telling me to text him once I’ve made it to the gate. We said goodbye, and I was on my way to security.
I ended up having about an hour and a half to kill at the gate, which didn’t bother me. I felt very relieved that the trip went so smoothly. It was definitely a new experience and something I would do again for sure.
For more about paratransit and transportation services in your local area, visit Easterseals.
This Mother’s Day, we are thrilled to introduce Sofiya Cheyenne as a guest blogger. Sofiya is …
This Mother’s Day, we are thrilled to introduce Sofiya Cheyenne as a guest blogger. Sofiya is a mom, actor, performance artist, teaching artist, and disability advocate. She was recently featured in the ‘That’s My Easterseals‘ PSA series to promote access to education for all children.
When my son Logan was born almost two years ago, it was the most transformative day of my life. I never knew I could love someone so quickly and fiercely; that’s when I realized being a mom changes you completely. And as a parent with dwarfism who gave birth to a child with dwarfism, I knew that this new love of mine would encounter barriers in his life, just like I have. Taking on this job is scary for any parent, but I am so lucky to have a supportive network. My friends and family have been encouraging of my growing family – especially since Logan is the first grandchild in both my family and my husband’s; it was a big deal!
Even with all the support I was privileged to have, the toughest thing about being a mom with a disability is the stigma that exists around it. When someone is pregnant, regardless of disability, the medical industry works so hard to convince these new families of a “healthy child.” What that means to mainstream society is “perfect genetics” with no differences or uniqueness – just predictability. The medical industry, and even society, can make you feel like you don’t belong and that you cannot or should not have children. They can make you feel like that you are not equipped to handle motherhood because of your difference. It is harsh, it is ugly, and it is wrong. And as you move through the world, you have to ignore these things. You have to push against these assumptions and literally dodge the negativity.
We MUST prove them wrong. It is only us that knows what our lived experience can be – our lived experience of survival that is beautifully unique. We must teach, we must advocate, we must choose the circles of doctors around us that believe the same things we do. It is exhausting and can be even defeating at times. But until the world is a place that can expect difference in the room at all times, we must push.
If you are new parents, a new mother, or a person that is starting to plan for a family, know that YOU are valued. YOUR family can thrive. As long as YOU choose the support that you need around you. YOU are in control. Do not let the doctors, the media, or society tell you otherwise. There ARE high-risk specialists and there are communities of support that value you as a person – you just have to do the work to find them. There are supportive policies and laws that exists today, thanks to the Americans with Disabilities Act, that can support your family. Your state, your county, and your school districts should all have information to support you in your child’s life.
I would encourage nondisabled and disabled people expecting a child with a disability to follow disabled parents on social media and read books by people with disabilities. Embrace disability culture and don’t be afraid to ask questions! Ensuring your child who has a disability has a connection to their disability culture is so important – it lets them know they always have a community to go to for support at belonging. The disability community needs each other to thrive and to survive – so why not give them access to culture from the very start?
Being a mom has made me a more confident, focused, and patient person. It is a selfless act, but it is also something that, if you lean into it enough, will help you grow. I don’t think there is anything different about being a mom with a disability – I just think that it comes with a different perspective. Because my son has dwarfism, my husband and I are so well equipped to handle any obstacle that comes in our way with Logan. We’ve been there. I believe in you, too – parents with disabilities out there, you’ve got this!
Business Owners: Get a Tax Credit for Making Accessibility Upgrades
Tuesday, April 12, 2022, 9:53 AM
Hey, it’s tax season! If you are a business owner or employer who hasn’t heard about incentive…
Hey, it’s tax season! If you are a business owner or employer who hasn’t heard about incentives to make accessibility upgrades, check out this helpful reminder from the Mid-Atlantic ADA Center. The site provides quick tips to help you figure out if you qualify. It includes an easy-to-read chart outlining federal tax incentives and shows you how to find out whether your state offers similar incentives. Three examples spell out how it might work for your business:
EXAMPLE A, CREDIT: Restaurant ABC employs 25 individuals, and its gross revenue for last year was $3,000,000. It qualifies as a small business with fewer than 30 employees. Last year, ABC provided Braille and large print menus (an auxiliary aid), costing a total of $1,500. ABC removed physical barriers to the restaurant’s entrance and modified its transportation shuttle, totaling $8,000. Each of these expenditures qualifies under the Disabled Access Credit. To calculate ABC’s tax credit, start by adding the total amount spent on accessibility ($8,000 + $1,500 = $9,500) and subtract $250 ($9,500 – $250 = $9,250). Divide this amount by two ($9,250 / 2 = $4,625) to find the amount redeemable as a tax credit. ABC earned a tax credit of $4,625.
EXAMPLE B, DEDUCTION: Corporation XYZ removed barriers to its building two years in a row. Although the corporation deducted $4,000 from its taxes last year, XYZ spent money on an additional barrier removal project this year. This is an annual tax incentive, so XYZ is eligible for another tax deduction. XYZ removed all barriers from its bathrooms this year, which cost $8,000. XYZ is able to deduct this amount, $8,000, dollar for dollar, from the amount of money on which it pays taxes.
EXAMPLE C, CREDIT & DEDUCTION: Small business QRS spent $20,000 on access improvements by modifying their restrooms and front entrance. These expenditures qualify under both the tax credit and deduction, so QRS can use these incentives in combination. QRS may first take a tax credit of $5,000 (based on $10,250 of expenditures) and then deduct $15,000 (the difference between the total expenditures and the amount of the credit claimed).
Whew! That’s a lot of numbers. If you have questions, never fear – the site offers many other resources, and it encourages you to call the ADA National Network for free technical assistance at (800) 949-4232.