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Accessible Transportation Means Independence for Connor

The McCarthy’s are a family who knows that life can change in an instant. Paul and Tanya McCarty live in Battleground, Washington with their two children. At the young age of sever, Conor, their son, was diagnosed with Ullrich Muscular Dystrophy, a rare form of Muscular Dystrophy. The doctors thought that he had only a mild case, but then things changed.

United Access Conor McCarthy

 

Ullrich congenital muscular dystrophy is a condition that mainly affects skeletal muscles (the muscles used for movement). Affected individuals show severe muscle weakness soon after birth, develop stiff joints (contractures) in their knees and elbows, and may have an unusual range of movement (hypermobility) in their wrists and ankles. Some of the debilitating symptoms of this disease include respiratory failure, scoliosis, and hip dislocation.

 

The last two years have been difficult for everyone in the family, but mostly for Conor. Conor stopped walking just before the 6th grade; contractures formed in his knees and elbows. Recently, Conor underwent a surgery to put rods into his back as a result of his scoliosis. Conor’s lungs are functioning at 29% of normal capacity.

“We, thankfully, do have a 2006 minivan,” says Mrs. McCarthy. “This is the only car we are able to get him [Conor] in and out of at this time due to the contractures in his knees. My kids go to a private school with no bus service, so we drive them back and forth daily. We have to lift my son in and out of the front seat.” As a result, Conor has chosen not to leave the house except for school. The lifting, pushing and pulling to transfer him in and out of the minivan has become too much for him. He says it hurts and he is afraid that his parents will get hurt as well.

 

Thanks to the Steelman Family Foundation, a few private donors, and the family’s own funds, the McCarthy family will be driving away in their beautiful midnight blue, side-entry, Honda Odyssey minivan from United Access [12905 NE Airport Way, Portland, OR 97230]. “Having an accessible van where Conor can easily enter and exit on his own is life changing for us. We will be able to do things as a family again and Conor will have his independence back.”

For more information about the Steelman Family Foundation, visit www.steelmanfamilyfoundation.org. For more information about United Access, visit www.unitedaccess.com.

Tips for Caregivers on Finding Special Needs-Accessible Housing

by Guest Blogger, Beverly Nelson

Affordability and availability are two of the biggest problems facing caregivers looking for homes that are accessible for a child or adult with special needs. Families who struggle to find accessible, move in-ready homes often have to settle for a home that needs modifications, which can be an extremely expensive proposition if you’re unable to find financial assistance or a government program to help defray the cost. Online resources for finding accessible homes are scant, though there are a few that allow you to do targeted searching based on specific criteria. In general, house hunting for families with a special needs individual can be difficult.

Accessibility

An accessible home is one that covers a wide range of requirements, with specific features and/or technologies to help accommodate people with mental or physical disabilities. Such accommodations should include kitchen counters and sinks that sit low enough to be accessible for an individual in a wheelchair. Other such features might include widened doorways (at least 32 inches across, according to the Americans with Disabilities Act, or ADA), roll-under stoves, wheel-in showers and electrical outlets that are high enough for ready access. For an individual with limited mobility, front stairs create an obstacle requiring an entry ramp, a feature that can be quite difficult to find.

Some houses may feature a few of these accessibility and safety features, but not all do, making it necessary to complete the work by paying a contractor to make needed modifications (or doing them yourself). Finding a fully-accessible home often does little good, because they can be very expensive whether you’re buying or renting.

Resources

Well-informed real estate agents who have experience working with disabled individuals often are the best (and sometimes the only) resource for families looking for accessible housing. However, there are a few websites offering detailed information about houses with the right accessibility features. Barrier Free Home is a searchable site with detailed information about accessible housing throughout the United States. Listings feature basic details such as square footage, number of bedrooms, if there’s a garage, etc., as well as information specific to disabled accessibility, such as whether it’s ADA compliant, if it has a level entry, roll-in shower, roll-under sink, bathroom safety features, and more.

AMS Vans provides detailed information about wheelchair-accessible housing and assistance programs, and the Department of Housing and Urban Development (HUD) also offers online resources for people seeking accessible housing.

Government programs

There are a number of programs administered by HUD that are aimed at making housing more affordable and accessible for America’s disabled/special needs population. Section 811 is dedicated to helping product housing for very low-income, non-elderly individuals who have significant disabilities. Under Section 811, renters pay 30 percent of their adjusted income, thereby ensuring affordability. HUD’s Section 8 Housing Choice Voucher program also helps very low-income families, people with disabilities and the elderly afford housing in the private market. Those who participate in Section 8 find their own housing but pay only 30 percent of their income.

Moving

A lot depends on finding the right company to handle your move. It requires time spent online doing research; reading customer reviews, investigating a moving company and its complaint history, verifying its certifications and insurance, and getting quotes before making a decision. A reputable company should take inventory of all your belongings and do a walk-through of your home to get an idea of how much needs moving. Never pay a cash deposit in advance, and avoid packing costs for boxes and packing materials. Getting everything straightened out in advance will help make sure all goes well on moving day.

Finding accessible housing if you have a special needs family member can take time and patience. Becoming familiar with your rights and available resources can help you find properties that address your needs and make it easier for a disabled individual to live in happiness and convenience.

Helping the Hardin Family on Their Road to Independence

Freedom to move around is something most people take for granted. For families like Steve and Jessica Hardin, this is not something they take lightly. Their three-year old son, Noah, suffers from Freeman Sheldon Syndrome, a condition that primarily affects the face, hands, and feet. Freeman-Sheldon Syndrome is also characterized by joint deformities that restrict movement. People with this disorder typically have multiple contractures in the hands and feet at birth as well as severe scoliosis. Last summer Noah got his first power wheelchair and has loved exploring his world on his own.

With this new power wheelchair comes even more challenges with transportation. The Hardins currently drive Noah in their small SUV, which is now too small and doesn’t come with a ramp or lift to help Noah and his new 300-pound power wheelchair in and out of the SUV.

“Our plan is to sell this vehicle and put the proceeds toward a wheelchair accessible van so that we can transport Noah’s chair,” said Jessica Hardin. “In addition, this would enable us to transport Noah while he’s seated in his chair. As Noah is getting bigger, it will be more challenging to lift him into his adapted car seat, particularly for my husband, who also has Freeman Sheldon Syndrome.” Currently, Noah’s power wheelchair has to remain at home or at preschool when the bus transports him back and forth to his developmental preschool.

 

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“The stories we hear every day and the smiles we see on our customers faces when they drive away for the first time, fuel our passion for the work we do,” said United Access Founder, Richard May.

Thanks to the generosity of the Steelman Family Foundation, the Hardin family will be driving away in their new 2016 BraunAbility Dodge Caravan today at the United Access [formerly Performance Mobility at 12905 NE Airport Way, Portland, OR 97230].

“We are dedicated to giving back to the community that has given so much to us,” said René Steelman, founder of the Foundation.

For more information about the Steelman Family Foundation, visit www.steelmanfamilyfoundation.org. For more information about United Access, visit www.unitedaccess.com.

Tips on Side-Gig Success for Caregivers without the Added Stress


by Guest Blogger, Beverly Nelson

 

Holding down a regular, full-time job can be impossible if you are a caregiver, but you still need a way to cover your financial responsibilities. That’s why more and more family caregivers are looking to side gigs to fill that gap in income. Balancing a gig with your duties as a caregiver can be a challenge, so use these tips to keep yourself from getting overwhelmed.

Work on Enhancing Your Hiring Skills

Side gigs are all about flexibility, but that does not mean you shouldn’t be prepared for the hiring process. Even if you are interviewing for a temporary position, prospective employers may still expect you to go through a fairly standard application process. A well-organized, concise resume is essential at any stage of your career, and you can use a resume template to take the guesswork out of this tricky document. Free online resume templates can help you get familiar with the basic resume structure and fill in the blanks for you.

While you’re working on your resume, you may want to brush up on your interview know-how as well. Chances are you will at least need to complete some casual interviews in order to get hired for your gig job, so do your homework when it comes to the most common interview questions. Practice your answers and have an elevator speech ready at all times. You never know when you will meet a prospective client — and you always want to “wow” them when you do. Just like your interview answers, practice can help you perfect your intro, so spend some time really polishing what you plan to say.

Find a Gig That Compliments Caregiving

Gigs are a go-to income source for those looking for maximum flexibility, which is what makes this kind of work perfect for caregivers. Another great thing about gig jobs, however, is that there are opportunities to get paid for just about any skill, so you can use what you already have or have a passion for. If you love animals and like staying active, you can get started as a dog sitter for your neighbors and friends. Online sitter sites have made it fairly simple to get started and you can even look after pets in your own home.

If pets just are not your thing, however, there are still an abundance of gig jobs you can try. Many of the highest paying gigs are even jobs you can do from the comfort of your home. This can make a real difference when you need to be around to provide care for a loved one. Being a medical coder or marketing consultant takes a higher level of skill set, however, but know that other side gigs require little to no prior experience. If you’re not sure which job to settle on, don’t be afraid to try different gigs until you find one that fits.

Take Your Self-Care Time Seriously

Starting a successful side gig can relieve financial tension, but you have to make sure your new gig does not lead to additional stress in other areas of your life. Caregiver burnout can be a serious risk for those who are providing daily care for family members. If you’re not careful, you may find yourself with a lack of energy, an inability to focus, and other physical symptoms that can interfere with your new gig, as well as your personal responsibilities. So, always set aside some time for self-care. Work some self-care basics into your morning routine, such as nourishing your body and meditation, to keep yourself in a positive frame of mind. Meditation can be especially helpful for caregivers, so consider setting up a quiet space where you can practice on a regular basis. This distraction-free area can also serve as a home office, which will give you more focus when it comes to your side gig.

Striking a balance between caregiving and earning an income can help relieve so much tension and give you some financial freedom. However, be careful not to overextend yourself, and use these tips to make getting started easy.

 

Photo Credit: Pixabay