Public Transit Choices by People with Disabilities
- DREDF is unveiling a short web survey, Public Transit Choices By People With Disabilities, as part of their transportation research on the Americans with Disabilities Act (ADA). Please visit the survey at
http://www.surveygizmo.com/s3/882523/TransitChoicesPlease take the survey and disseminate this notice so others take the survey. Your responses will help DREDF understand what factors are most…important to riders with disabilities when deciding which transit mode to use.
Organizations:The confidential results will be part of a national study called Transit Cooperative Research Project B-40: Strategy Guide to Enable and Promote the Use of Fixed-Route Transit by People with Disabilities. The goal is to develop strategies to improve bus and train systems for people with disabilities. DREDF’s research partners are TranSystems Corporation, The Collaborative, and KFH Group.
- Please take the survey, and encourage others to do so!
6 Things You Don’t Know About A Special Needs Parent
I found another nugget! I really enjoyed this blog and hope you do also.
Maria Lin
Editor-in-chief, LearnVest
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum’s daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We’ve been in and out of hospitals and doctors’ offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don’t know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don’t share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don’t claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I’ve missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors’ visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It’s a hard one for me to come out and say, but it’s true. When I see a 1-year-old baby do what my son can’t at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend’s kids. Sometimes, I just mourn inside for Jacob, “It’s not fair.” Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob’s rare condition. It sounds petty, and it doesn’t diminish all my joy and pride in my son’s accomplishments. But often it’s very hard for me to be around typical kids with him. Which leads me to the next point…
3. I feel alone. It’s lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it’s so not what my world looks like (check out Shut Up About Your Perfect Kid). It’s been a sanity saver to connect with other special needs moms, with whom it’s not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob’s unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I wish you would stop saying, “retarded,” “short bus,” “as long as it’s healthy… “ I know people usually don’t mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It’s disrespectful and hurtful to those who love and raise the kids you’re mocking (not to mention the kids themselves). As for the last comment, “as long as it’s healthy,” I hear a lot of pregnant women say this. Don’t get me wrong, I understand and share their wishes for healthy babies in every birth, but it’s become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. “And what if it’s not healthy?” I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
5. I am human. I have been challenged and pushed beyond my limits in raising my son. I’ve grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I’m just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it’s nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it’s because it can be hard to talk about my son. Which leads me to the final point…
6. I want to talk about my son/It’s hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I’m having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don’t often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn’t mean that I don’t want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like “How did Jacob like the zoo?” or “How’s Jacob’s sign language coming along?” rather than a more generalized “How’s Jacob?” which can make me feel so overwhelmed that I usually just respond, “Good.” Starting with the small things gives me a chance to start sharing. And if I’m not sharing, don’t think that there isn’t a lot going on underneath, or that I don’t want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I’d come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary “performance” difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is — no matter how they stack up against what “should be.” Raising a special needs child shatters all the “should bes” that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don’t know about a special needs parent… I may have it tough, but in many ways I feel really blessed.
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
Study participants needed – wheelchair users
Are you a wheelchair user who would like to share your experiences in trying to visit the inaccessible homes of family and friends?
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I am a researcher at the University of Kansas who is conducting a study on the effects of invisitable homes on wheelchair users.
To be eligible to participate, you must
? be a wheelchair user who cannot walk at all
? be aged 18-65
? have used a wheelchair for five or more years
? have access to a phone
? be willing to talk about your experiences in visiting family and friends.
Participation will involve
? being interviewed by phone for about one hour and
? providing feedback on a summary of the interview (should take about 30 minutes)
A small stipend will be provided – $20 for completing the interview and $10 for giving feedback on the summary. Women and people living in rural areas are especially needed. As the study is being conducted by phone, people living in any state are eligible.
If you are interested in participating, please contact me by phone (785-864-0631) and leave a message so that I can call you back. Or email me at dotn@ku.edu. I will get back in touch with you to ask some questions to determine your eligibility to participate.
Thank you!
Dot Nary
University of Kansas Research Associate
How to Find Wheelchair Access Around the World
Anyone who follows this blog knows that I love “nuggets” of information when surfing the web. Well, here is another one I found! This was a posting on Facebook by Museum of disABILITY History via Spina Bifida Association
For those with disabilities, traveling around the world is a little more difficult if not downright daunting. To find an accessible local business or service is difficult enough, but in a foreign country it is almost impossible – or at least it used to be.
That is until Raul Krauthausen of Germany, a wheelchair user himself, developed a free iPhone app just for that. Called Wheelmap, the app shows wheelchair access places around the world and rates them on their accessibility.
Red, yellow or green tags indicate the level of wheelchair access of each location. Red has no wheelchair access, yellow has partial wheelchair access and green is totally accessible for wheelchair use. Gray locations mean that place has yet to be rated.
That’s where users can help. Since the app is also linked to the Wheelmap website, gallivanting travelers from around the globe can rate locations on their accessibility and even share tips. While most of the cities are in Germany right now, you can rate anyplace you’ve been – buildings in your local town or those you have traveled to in your state, the USA or Canada. Major cities like London and New York are growing in ratings, but you can put your own city on the map!
This interactive feature has proved popular and expanded the list of accessible buildings. The app is quickly being used worldwide.
You can rate locations without registering, but must log in to add specific comments and share tips. It is still a work in progress, but you can help it grow!
Visit the English version of the app at http://en.wheelmap.org/.
This mobility safety update has been brought to you by NMEDA – the National Mobility Equipment Dealers Association. Need some information on how to make your vehicle wheelchair accessible or upgraded with the latest and most convenient features? Contact a NMEDA dealer in your local area. Your local NMEDA member is a mobility equipment and accessibility expert!
New mental health policies are harming people in need
New mental health policies are harming people in need
One of the hardest parts of the work at the group I’m fortunate enough to lead — Disability Rights NC — is listening to the stories we hear every day. Stories of people desperate for help because of disability-based discrimination. Stories of abuse and neglect. Stories of North Carolinians who have been denied the care they need. Stories like Gary’s.
Gary has serious mental health and developmental disabilities. Last year, Gary was moved to a new “specialized†home by his Local Management Entity or “LME†to save money. (LME is the bureaucratic name North Carolina uses for the groups that are charged by the state with overseeing services in different regions). Gary didn’t have any choice; the move was about saving money. But Gary is an easygoing guy with a keen sense of humor. So he is trying to make the best of it. He tells jokes to his residential staff. But they don’t laugh when they should. They don’t get it. They don’t understand much of what Gary has to say. That’s because Gary is deaf and uses American Sign Language (ASL).
None of people working at his home are fluent in ASL. They can’t carry on a conversation with Gary. This bothers Gary. He is frustrated because they don’t laugh when they should and they don’t explain things to him. Gary can’t understand why he can’t go to Wal-Mart. Staff might have good reasons but they can’t communicate them, so they only tell him no. When he gets frustrated, he sometimes gets mad.
Away from home, Gary works with people who sign. The days mostly go smoothly. But nights and weekends are tough. And they aren’t going to get any better for Gary. His residential provider cannot afford to train the staff in ASL because of the rate they are paid. And the LME administering Gary’s Medicaid services claims it can’t require its providers to have staff proficient in ASL.
Gary is stuck in the State’s new approach to managing mental health services. It’s called “behavioral health managed care†a system that will provide each consumer with “what he needs, no more and not less.â€
How did we get to a place in which we rely on such a system?
Unfortunately, a lot of it has to do with some simple law changes recently made by state lawmakers. Convinced by the self-reported successes of a single managed care model, the General Assembly passed a law mandating statewide adoption of this model. The hope was that it would enable the State to better control Medicaid costs.
Sadly, this is little more than a hope. North Carolina has little experience with a behavioral health managed care model. Out of 23 LMEs, only one operated such a system prior to the adoption of the new law. It covered only five counties (Davidson, Rowan, Cabarrus, Stanly, and Union) and state regulators paid little attention to its operations.
Recently, the nationally-respected Kaiser Commission released a paper titled “People with Disabilities and Medicaid Managed Care: Key Issues to Consider.†Two of its main points go right to the heart the matter.
The first discusses the rates paid to providers for people with disabilities. Not surprisingly, rates have to be sufficient to recruit quality, skilled providers and they must take “into account the cost of specialized services and the higher cost of managing care for complex patients.†North Carolina does not pay such adequate rates at this time.
The Kaiser paper also projects that “risk-based managed care for persons with disabilities is not likely to generate short term saving.†With provider rates already low, there is little opportunity for cost savings except to reduce access to services. That puts consumers at risk of receiving less than the medically necessary treatment.
Historically unmet needs, increased care coordination expenses, and up-front administrative costs will further compromise the likelihood of short term savings. It is Kaiser’s opinion that real savings in managed care will come in the long term only when better clinical management and care coordination reduce hospitalization.
In principle, the goals of the North Carolina plan are commendable. They include: improving access to services; enhancing the quality of care — ensuring services are managed and delivered within a quality management framework; and empowering the parties, consumers, families, and LMEs to shape the system through their consumer choice and strategic partnerships.
Many of the consumers transitioning to the new management model, however, fear that the goal of short-term cost savings will eliminate any possibility of achieving the improving, enhancing, and empowering goals stated above.
Gary is proof that this fear is well-founded.
Guest Blog by Karen Stallings
