Recently, while waiting for a flight from Salt Lake City to Chicago, I was seated next to a woman whose leg was in a full-length cast. The ski resorts were just starting to open for the season, so I asked her if she had injured herself on the mountain.
She said she had actually slipped off a curb in Los Angeles and was returning to Chicago. But her trip was definitely going downhill.
It seems the injury wasn't nearly as painful as trying to fly home.
Apparently, when she got to Los Angeles International Airport, she couldn't find a skycap with a wheelchair, so she had to walk to her gate. When she got to security, she was pulled aside for a more thorough check. And when she finally arrived at the boarding gate and asked the agent for an aisle seat, he acted extremely put out and told her he couldn't guarantee the seat; she would have to wait and see.
The poor woman was close to tears. She said she would have to cancel her flight if she didn't get an aisle seat because there was no way she could sit in a middle seat with a leg she couldn't bend.
Finally, after making her feel like a complete burden, the agent begrudgingly found an aisle seat for the poor lady.
The woman clearly didn't know about the Air Carrier Access Act that was passed by our government in 1986. The act prevents airlines and airports from discriminating against people with disabilities. All United States airports and all carriers flying within the United States must abide by these rules and be handicap accessible.
But with overcrowded airports and understaffed airlines, it isn't always easy for a person with a disability to get through the system. So, here are some ways to make air travel more trouble free when you have physical limitations:
• Plan ahead. Unless you're traveling on a stretcher or plan to use oxygen during the flight, you don't need a doctor's note to fly. And you don't need to carry a handicap tag to get service. But if you have special needs, you do need to make sure the carrier you plan to use offers the services (some airlines, such as Southwest Airlines, don't allow passengers to board with medical oxygen).
If you need a special service, such as a wheelchair or assistance boarding the aircraft, contact your airline at least 48 hours in advance and arrive at your gate with an hour to spare before departure.
Even if you don't give advance notice, the airline must still try to grant your needs, but it's a gray area and they're off the hook if it would cause a flight delay.
• Know your airplane's limitations. Not all aircraft are created equal. Some airplanes have movable aisle armrests to make it easier to sit down. And if they do have them, the locations can vary. Some of the smaller aircraft have limited storage space for wheelchairs and might not be large enough to accommodate an in-aisle wheelchair. But you won't know what's available unless you ask the airline.
• Know your rights. If you need assistance in boarding or deplaning, the airline is required by law to help you. And you should not have to deal with surly airline employees.
The United Spinal Association has published a pamphlet that outlines all the rules of air travel for people with disabilities. You can access the pamphlet at www.unitedspinal.org. And the Department of Transportation also offers information for passengers traveling with disabilities at the Web site www.dot.gov.
Remember, the airline is a service industry and you deserve to be treated with respect. Don't leave the ground without it.
Nonprofits like Blue Cap depend on state funding to provide consistent services. As we wait for Illinois' leaders to pass a state budget, even the youngest children with disabilities may be affected. Blue Cap appreciates the work of our state leaders and urges them to come to a quick consensus that promotes the best public welfare, especially for people with disabilities.
July 17 marks the 17th anniversary of the Americans with Disabilities Act, which President Bush hails as
"one of the most successful and compassionate reforms in our Nation's history."
This legislation promotes equal opportunities and broad protection for people with disabilities and has set the stage to end the segregation and isolation of people with disabilities. Together, we are working to fulfill the ADA's promises and make dreams possible for people of all ages with developmental disabilities and delays. Your support makes this possible.
Click here to learn about the history of the ADA and the role regular people with and without disabilities played in its passage.
Recently the Daily Southtown published an interesting article on the benefits of music therapy for the treatment of cancer and rehabilitation. Music therapy is an important tool in communicating with individuals at different levels; it helps to stimulate, grab attention and build motor skills.
Evidence mounts on the medical benefits of music therapy.
Published by the Daily Southtown July 17, 2007
There's a reason even the most flat, tone-deaf and shrill of us sing in the shower. It makes us feel good, says music therapist Donalyn Richardson.
Doctors, too, are embracing the feel-good properties of music for the treatment of cancer and rehabilitation.
Banner Desert Medical Center in Mesa, Arizona, for example, recently received national certification as a music-therapy internship site. The program reflects the fact that music therapy is gaining ground as a complementary treatment.
"It's definitely a feather in our cap," says Richardson, Banner Desert's music therapist. It signifies "more of a support from a traditional medical standpoint that people are more than their bodies."
Music therapists say they are being afforded the same credibility as speech and physical therapists, thanks to growing evidence of music's tangible health benefits.
Consider:
*According to a study last year released in the Journal of Advanced Nursing, people who listened to music for an hour every day for a week reduced their chronic pain by up to 20 percent and lowered their depression by as much as 25 percent. Participants in the study kept a pain journal during the week; the study didn't indicate how long patients benefited from the therapy after it was discontinued.
*The Cleveland Clinic in 2001 found that music lowered stress levels and helped build immunity in young cancer patients. It is unclear how long patients' immunity stayed elevated.
*A University of Miami researcher who continued his work at Michigan State University found in 1999 that levels of melatonin in Alzheimer's patients increased and that patients became more active, slept better and cooperated more with the nursing staff after undergoing four weeks of music therapy. The increased levels of melatonin - a hormone linked to sleep regulation, increased immunity and a calm relaxed mood - stayed elevated for up to two weeks after the music stopped.
Other research suggests that music boosts weight gain in premature infants, lowers the heart rate and improves the recovery time of stroke victims.
Music therapists offer more heartfelt evidence. Richardson speaks of writing lullabies with mothers on the verge of premature delivery so they can relax and know they are bonding with their child, and of being thanked by a family that was comforted when she sang "Amazing Grace," at the bedside of a dying person.
Music therapist Lisa Sampson, who works with Phoenix Children's Hospital, says anecdotal evidence, such as a patient who previously showed no arm movement but who now can shake a tambourine during music therapy, abounds.
"What's really neat about music is that even if I don't speak Taiwanese or Korean, I can bring in a huge ocean drum and the child and I can move it back and forth," Sampson says. "We don't need to speak the same language to understand one another."
Sampson began doing music therapy in the Phoenix area in 1999. She now oversees 16 people who work in hospitals and other medical settings.
In a tiny circle of chairs at Banner Desert Medical Center, parents accompanied children who, in wheelchairs or attached to intravenous drips, banged on the drums they held in their laps. Richardson told them to "think about what's bugging them big time," to put that thing in the center of the drum, and to pound as loudly as they want.
Dallas Vaughan, 6, put his boredom and frustration at being separated from his siblings in the drum's center with a series of pings. His father, Scott, beat his own drum loudly.
"I couldn't say enough good things about this program," Scott Vaughan says.
Maureen Cahill, senior clinical manager of pediatric oncology at Banner Desert Medical Center, also weighs in, saying she believed that music therapy was a frill 15 years ago.
"Then I became convinced," she says. "If we could study it here, I do believe these kids who use music as a symptom reliever use less pain meds, less often."
This Saturday, July 21, thousands of people with and without disabilities will join in the Chicago Loop for the 4th Annual Disability Pride Parade. This fully inclusive celebration is designed to "celebrate and strengthen the pride, power, and unity of people with disabilities, our families, and allies" and hopefully "change the way people think about disability."
The parade starts at 11 a.m. and ends with a post-parade celebration in Daley Plaza. Join the fun!
New Funding To Expand Services For Children With Developmental Disabilities
Posted by: Illinois Health/Human Services on 06-18-2007.
Children With Developmental Disabilities Illinois will receive $8.6 million in federal matching funds to provide a range of specialized services to almost 800 children with developmental disabilities.
The funds, administered through the Illinois Department of Human Services (IDHS) Home and Community Based Services (HCBS) program, will allow more families to keep their children at home and still be able to provide them the specialized care they need.
By establishing Medicaid waivers, Illinois is able to waive regular Medicaid rules and create this new funding source for Fiscal Year 2008. The approval of the waivers was announced by Deputy Governor Louanner Peters at a joint videoconference of the Developmental Disabilities Waiver Committee, the Autism Task Force, legislators and other developmental disability advocates.
"It is often a struggle for families who have children with special needs to make sure their kids have the best care possible," said Gov. Blagojevich. "These two new programs will give hundreds more families access to support and services so they can care for their kids at home."
The new waiver programs, approved by the Department of Health and Human Services (HHS) Centers for Medicare and Medicaid Services, will serve young people age three to 21 who meet the Intermediate Care Facility for Developmental Disability (ICF-DD) level of care. Children with developmental disabilities include those with mental retardation and other related conditions such as Cerebral Palsy, Autism Spectrum Disorder, and Epilepsy. The children's support services waiver will prevent or delay the need for out-of-home care for 600 people and the residential services waiver will provide services for approximately 175 to 200 families whose children need out-of-home residential services.
"Through Medicaid waivers such as these, Illinois is able to provide assistance to even more children and adults in need of long term health care services," said Illinois Healthcare and Family Services Director Barry Maram. "Under Governor Blagojevich we have made great strides in furthering the growth of our Medicaid system and have found more ways to extend these critical health benefits to more individuals."
The children's support waiver will offer a range of services including personal support such as training, respite and personal care; home and vehicle accessibility and modifications; adaptive equipment and assistive technology; training and counseling services for unpaid caregivers; behavior intervention and treatment; and service facilitation. The children's support waiver is very flexible for families. Parents may use a monthly allocation of funds to purchase services from the list of covered services. They may purchase these services from traditional developmental disabilities providers or may purchase them from individuals in the local community who wish to provide personal support.
"We appreciate the support of the legislators, advocates and families who helped obtain the new waivers. They will enable more young people with developmental disabilities to enjoy meaningful relationships with family and friends and others in their lives and experience personal growth and development," said IDHS Secretary Carol L. Adams, Ph.D. "The array of services will provide opportunities for the young people to have more choice in their services and how they live their lives."
The new waivers are approved for a three-year period beginning July 1, 2007 and can be renewed at the end of that time. The IDHS Division of Developmental Disabilities administers the Illinois system of programs and services for person with developmental disabilities.
The Arc of Illinois recently posted a beautiful article on coping with life's daily challenges, especially for parents of children with disabilities. It's brief but inspiring:
"We use hope as a compass to direct our path and give substance to our vision. But we temper precarious hope with gratitude and trust. Trust that whatever comes will be just as it must be. Trust that we will endure any trial that comes our way. Trust that for everything that appears bad, there is goodness on the underside. Gratitude for that good -- for the new understandings and insights that can be found under every obstacle and tragedy in our path. Gratitude for the wonderful gift that is our child (my emphasis)."
Our children are wonderful gifts indeed.
Last week, the Nonprofiteer wrote about Tessitura, a customer service software system developed by the Metropolitan Opera that it sells to arts organizations across the U.S. This program not only raises money for the Met, a nonprofit organization, but it also helps other organizations better serve their patrons.
Blue Cap is a little smaller than the Met, but we are very excited about a new software program we are developing that will help us improve our service quality. This program will improve our service quality and give our staff more time to support the people we serve. Once completed, it can also be distributed to other organizations to help improve their programs.
Thank you to the Ray Graham Association, which is partnering with Blue Cap on this project, as well as The Coleman Foundation and the Abbey Woods Foundation for their generous financial support.
These parents of a child with autism fought their school district over who should pay for their son's education and where he should attend school. (In this case, they won the right to represent themselves in federal court.) It is interesting to see how hard many parents of children with disabilities must work to get the right education for their children.