Wednesday, December 12, 2007

Air Travel: an impending adventure

My family is taking me to Portland, Oregon USA in the spring, so I have been doing some work on airfare, availability, hotels, light rail -- and accessibility. Fortunately, we're going to Portland, where I have visited a few times (great restaurants), and it seems to be an accessible city. The airport (PDX) is smaller than many, but open and easy to navigate (and free wireless). The MAX light rail provides cheap and accessible transportation from PDX to center city; once there it is free to use in the downtown area, and that includes much.

I am more concerned about getting to Portland from PHL, the home of the "losingest" team in professional sports (though I was pleased to find the Philadephia Airport has an ADA/Text-Only View, and Accessibility/ADA page and even an accessibility guide; you may also call 215-937-5499, or TDD# 215-937-6755, to request the "Getting Around Guide." -- cool).

I started looking at airline websites, and found a few helpful things, like
I invite -- no, encourage -- any reader who has traveled with a disability or a person with a disability to share their experience, and any effective tricks, phone numbers or other resources that we all can use. I will certainly share mine.

Monday, December 10, 2007

More Hurdles for our Families

I doubt I can keep up the pace of a post a day, but I just could not resist the front page story in the NY Times about "Disability Cases Last Longer as Backlog Rises," with reports of waits as long a three years (although 2/3 of those initially rejected win their cases, so persistence pays off more than not -- but you knew that already :-).
I hate to be cynical (but willing to do so for this cause), there's more incentive to reject as much as possible -- the articles cites some of the "incentives," like people do not persist past the first rejection, do not get help, lose resources like homes due to bankruptcy and other obstacles while waiting, or simply die in the queue -- plus, from what I can read, there are no penalties (i.e., "dis-incentives") for the SSA to face should they reject improperly. Surprise, the backlog, the frustration (but a more fiscally sound SSA that politicians can brag about).

Seems the only disincentive I can see is the political fallout from frustrated citizens without disability support who can still vote, and will certainly vote this issue as it impacts their lives directly. Not only would I vote this issue, but so would all of my daughter's family, friends, friends of friends, and citizens whom she has met at awareness and fund raiser functions.

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Also in the NY Times, an article that concluded with the following paragraph:

“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”

Like the disability itself (or the administrative bureaucracy) isn't enough of a fight?

Saturday, December 8, 2007

Meeting Summary with OT Heather

Today we had a nice crowd at the Chestnut Hill Library to hear from our invited speaker, Heather Bowditch, an Occupational Therapist with some extended preparation in clinical psychology (i.e., one of the good guys for parents :-) -- after our typical round of brief but important introductions, Heather began by reviewing some of the existing literature on how parents (and families) cope with the issues surrounding disabilities in the family.

Heather noted that some believe the way people cope with disabilities is related to similar stages used to cope with death (K├╝bler-Ross model): namely, denial, anger, bargaining, depression, and eventually acceptance. There was much discussion about this topic among those in attendance, with a consensus that while there is some similarity, there is also difference (e.g., non-linear, many stages are repeated, some experienced concurrently).

Many also reported that since there is really no time to grieve, many simply grieve in a "functional" way -- in other words, either the feelings are experienced while we are caring for our children, or they are addressed quickly (if at all).

Certain stages, like anger, can provide "apparent power" to cope with a sense of powerlessness; we debated on the effectiveness or the appropriateness. Then there is acceptance, a final destination for those grieving about death, but somewhat different when there is no known end in sight. One person noted that acceptance needs clarification and context; we accept the disability, but not for such things as level of service or ignorance.

Personally, I was glad that Heather provided much space for discussion throughout her presentation. I was also very happy that there were great sandwiches available before the meeting so I could concentrate on the discussion :-). Heather can be contacted by email.
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My wife wanted me to make sure everyone in the group knew about the C2P2EI workshop on advocacy for our families and kids, it's a few hours from Philly but a worthwhile opportunity to network and to learn.

Welcome to SPEC Online

It has taken longer than I expected, but I am finally able to say, "welcome to SPEC online" -- for the last seven years, this group of motivated parents (read later to see why we are motivated) has met monthly during the academic year to exchange ideas, explore advocacy options and obtain expert guidance for a set of dedicated members of the community to help families with children who have disabilities. For now, this blog will serve as the primary location for continuing dialogue about the topics that we start in the meetings but never seem to have enough time to finish.

Special Parents for Exceptional Children (SPEC) meets monthly when possible at the Chestnut Hill Library (photo right). Thanks to them for making space available on Saturdays, and click here for map and directions. We typically open with a light lunch provided by members and funded by a small grant from the Philadelphia Department of Health (I think -- corrections can be sent to me or posted as replies).

Each meeting has either an agenda (business to get done) or an invited speaker on a topic for the entire group. Past speakers have been Joe Scullin of UCP, Ruth Landsman of Ed-Law Center, and Doug Dye, attorney with expertise in special needs trusts and other financial and legal issues for our families. This group is as grass-roots as it gets, members suggest and invite speakers, make up the audience, and (eventually) work online.

Why we do what we do: yes, it starts out as for the children, but it as much for the parents; to learn, to support, to commiserate, and eventually to grow to accommodate the challenges we face -- more together than before the meeting.

Kudos to Jill Spector for starting this group, and to Jean McCoubrey for keeping it going for all these years -- I was supposed to put together a website, the easiest part of this project, so of course it took the longest time :-(. I will start as the first poster, and invite people to either respond to a given post or email me with content and other ideas. It may take time, but I am hopeful that this blog can help continue the work of SPEC outside of the meetings, perhaps even connect to other resources and groups. Your help is encouraged and appreciated -- J.D.