Living With Cerebral Palsy as an Adult

Thanks to technology, social services and other support, people who have cerebral palsy (CP) have better chances than ever to lead independent, fulfilling lives.

From a Velcro grip for holding a fork to computers controlled by eye movement, special equipment can help people with CP in every area of daily life. This is called assistive technology, and you want to remember that term. Social service groups that assist people with disabilities use it all the time.

If You Need Help Buying Equipment

Federal law requires each state to have a program that helps people find the equipment they need. The RESNA Catalyst Project, run by a group that focuses on assistive equipment, has contact info for each state’s program on its website.

None of these gadgets are free. For people whose budgets are stretched, United Cerebral Palsy’s Elsie S. Bellows Fund offers grants to help people buy or maintain equipment. Each state has a program that helps people find loans, and the RESNA Catalyst Project’s website also has contact info for those.

Things That Help You at Home

Whether a person with cerebral palsy lives on their own, with family or in a group setting, they have to have a home that’s accessible. After you find a home, you might be able to make it more livable than it already is.

The Fair Housing Act requires landlords to adapt to people’s needs in reasonable ways. For instance, you can have an assistance animal, such as a guide dog, even if your apartment building has a no-pets policy. Or, if your complex has no assigned parking spaces, you still could get one close to your unit if you have trouble getting around.

Federal law also lets you modify your residence in reasonable ways, such as by putting grab bars in a bathroom, but your landlord is not required to pay for these changes. And federal law forbids landlords to discriminate against the disabled by turning down applications or trying to tack on special fees.

If you have CP, assistive gadgets in your home let you be more independent than you could have been just a few years ago. Special control units can enable you to operate the kitchen stove, for instance. As the home computer becomes more and more essential to daily life, aids such as voice recognition programs let you use one even if you have problems with movement.

Getting Out and About

Public transit systems focused on accessibility enable people with disabilities to move around their communities on their own. 2-1-1 phone information lines can help you find what’s available near you.

For some people, driving their own cars is within reach, thanks to assistive equipment and modified vehicles:

• Hand controls can take the place of the gas and brake pedals.
• Joysticks can compensate for limits in hand motion.
• Automatic door openers make it easier to get in and out.

If you hope to drive, start by talking to an instructor who’s trained to work with people who have disabilities. They can figure out your muscle strength, range of motion and other things. You can find an instructor through your local rehabilitation center or on the Association for Driver Rehabilitation Specialists’ website.

You can take to the skies, too. Federal law requires airlines and airports to accommodate people with disabilities. The federal Transportation Security Administration (TSA), which handles airport security checks, helps people with disabilities through a helpline called TSA Cares. Seventy-two hours before leaving, you can call (855) 787-2227 for information about security policies and what to expect.

The TSA’s website has a form called a notification certificate you can fill out and take along to let security staffers know about your condition. Joining the TSA pre-check program can help security checks go more smoothly, too. At the airport, you can ask a TSA officer to call a passenger support specialist — this is a person trained to help you through the screening process.

Health Issues You Need to Watch For

Because of the stress that CP puts on your body, you have to be on guard moving through adulthood. Doctors and therapists can help you watch for and deal with things like:

• Pain (especially in the hips, knees, ankles, and back)
• Arthritis
• Post-impairment syndrome (a mixture of pain, tiredness and weakness caused by things like muscle problems and stress from repeated motions)
• Depression(The emotional support you get from others makes a difference.)

Going to Work

Working is an option for people with CP, depending on their condition. You have allies in their quest to develop their skills and find jobs:

• Local branches of United Cerebral Palsy (UCP) offer classes and help with job searches. You can search for your local branch on UCP’s website.
• Centers for independent living across the United States also help people explore their possibilities. The Independent Living Research Utilization program has a guide to locations on its website.
• The CareerOneStop website can help you think about your capabilities and track down whatever education or opportunities you need.

When you start job-hunting, remember that the Americans with Disabilities Act forbids an employer to discriminate against an applicant or worker because of their condition. The law also requires employers to allow for a worker’s disability when reasonable. For instance, if a job requires you to stand, you might use a tall stool if it helps you do the task.

If you need help making ends meet, check out Social Security’s Supplemental Security Income program. People with disabilities can use this money for food, housing and clothes.

Recreation

Everyone wants to enjoy life, and assistive equipment plays a role here, too. Gadgets such as book-holders and automatic page-turners make it easier to read. Lightweight, nimble wheelchairs make it possible to play basketball and other sports. As technology advances, the possibilities will continue to grow.