Abilities Alliance

This is a great program created by a partnership amongst 4 colleges/universities in Ohio Ohio State, Wright State, Sinclair CC and Columbus State. The video is particularly interesting and may be encouraging for young adults with disabilities driven towards a career in technology.

http://www.osu.edu/features/2009/nisongercenter/

Check it out and let me know what you think!

Disability Policy Seminar- day THREE and Hill visits!

Disability Policy Seminar
April 29, 2009
Day three- hill visits

Today I visited Ohio House of Representatives staff members from Mary Jo Kilroy and Tim Ryan’s offices. We spoke mostly about the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) which (I am ashamed to admit that I didn’t know this) funds the UCCEDD’s. We had such a great combination of perspectives including parents, a clinic coordinator, a physician and me, a trainee!

A photo outside the office of Ohio Representative, Mary Jo Kilroy

I was able to talk to one representative about the benefits of the LEND traineeship from a trainee perspective. I told her how I feel more prepared than my non-LEND trainee classmates to enter the field as a pediatric PT because of my additional clinical experience but more importantly my knowledge of the systems, resources, funding options for families and the other disciplines involved in the child and family’s life. I think she liked what I had to say because I saw her take some notes. And I tried to get in that training programs ultimately save the system money because clinicians are (hopefully) more knowledgeable, efficient and well-prepared. She conveyed that the Representative she works with is in support of the act. Maybe this team will have some tools to convince fellow representatives to support the DD Act

Disability Policy Seminar day TWO

Disability Policy Seminar
April 28, 2009
Day two

Today was another busy day of session and planning for tomorrow’s hill visits. A few key items caught my attention.

First, I learned about some internet resources for keeping up with government spending and funding and legislative news:

http://www.recovery.gov/ is a website with information about how the US is spending stimulus money. It is updated daily to reflect the most accurate current spending. Each state has a similar website. I found Ohio's by visiting this link and clicking on the state of Ohio on the map: http://www.recovery.gov/?q=content/state-recovery-page

http://www.grants.gov/ is a website with information about how to get the funds that are being provided by the stimulus packages.

Also, http://aucd.org/template/page.cfm?id=164publishes online legislative news briefs every Monday. It sounds like a quick and simple way to stay up to date regarding new bills and appropriations.

Health care reform came up in many of the discussions today. I am enrolled in a health policy course this quarter as part of my DPT curriculum and we completed a group project in which we had to design a new health care system so I have a relatively new interest in this topic. Some of the most interesting points were mentioned during the question and answer sessions! One self-advocate spoke about the inaccessibility of medical equipment (exam tables, etc) and need for better education regarding care for persons with developmental disabilities for all physicians.

She mentioned that a physician told her she needed to get a cardiovascular workout in order to lose weight but she was unable to find an accessible fitness facility. That comment, of course, sent my brain spinning with possible projects for physical and occupational therapists and trainees!

A LEND trainee takes advantage of Q and A time during legislative briefs

One final noteworthy mention is the confusion and differences in opinion related to autism legislation. Some conference participants felt that the legislation needed to be specific to Autism. Others urged the panel of specialists to include “Autism and other developmental disabilities” in the legislation. The most interesting idiosyncrasy to me (and the trainees I was seated with) was a panelist’s response to the request to include all disabilities in the legislation. She responded that the legislation contains the wording “Autism spectrum disorders and other related disabilities.” Well, what constitutes a related disability? It sounds a bit like a loophole. Was this merely a poor paraphrasing of the legislation? I think its something we need to be aware of. After all, it was poor phrasing that caused the Medicare cap to include reimbursement for $1500 of speech or physical therapy services instead of $1500 for speech and $1500 for physical therapy.

Trainees from The Ohio State University relax after a busy day!

It was another very busy day and I’m starting to regret that I only packed one pair of black shoes because my feet could use a change! Looking forward to tomorrow.

Disability Policy Seminar Day ONE

Disability Policy Seminar
Day one
April 27, 2009

What a jam-packed and exciting day! I started the day with a trainee meet and greet where I met some new faces and reunited with some familiar ones. At “Lobbying 101,” a session for Disability Policy Seminar first timers, I gained some tips for successful interactions with legislators. Most notable were the importance of personalizing messages (including the subject line of an email) and emphasizing a personal connection with the legislator or staff member such as your membership in their district or a mutual acquaintance.

Kareem Dale addresses the audience

Later we heard from disability policy specialists Kareem Dale and Connie Garner. Kareem is an assistant to President Obama while Connie works for Senator Ted Kennedy. It was a great dichotomy to hear perspectives and priorities from both the executive and legislative branches.

Connie Garner shares her insights

In the afternoon, policy and advocacy specialists from all the co-sponsors for the Disability Policy Seminar gave quick briefs and entertained questions related to upcoming legislative issues including social security, healthcare reform, employment, education, autism, and others. I am looking forward to more detailed information and focused discussions at the concurrent sessions on Tuesday.

Kim Musheno briefs on current legislation and policy updates

I had the privilege to share in the Leadership in Disability Policy Award ceremony where Congressmen Steny H. Hoyer (D-MD) was recognized. He shared an empowering message regarding the impact we as constituents can have in influencing our legislators.

In the evening, the trainee reception was a big success. Trainees from NY, NH, MA, OH, RI, OK, VA, NM, WI and others gathered to network with AUCD staff, program faculty and most importantly, other trainees! It was wonderful to meet fellow trainees and learn about other programs. After the reception, some trainees met for dinner which included an interesting conversation about school-based services for children with disabilities.

It was a busy first day and it passed very quickly! I am looking forward to the concurrent session on Education Policy Updates during day two.

Trainees from The Ohio State University take a break from the sessions for a photo!

Commercial contest

A link to the story: http://www.aucd.org/template/news.cfm?news_id=3759&id=16 A brief reaction, today. I had a conversation last fall with a clinician regarding inclusion of individuals with disabilities in advertising. Essentially, the facility we were in had pictures everywhere of children with different colored hair, eyes and skin. Pictures of children of varying ethnicities, ages, and sizes. But not one picture of a child with a disability. Not one picture of a child with a complex medical condition. The facility is one that treats all types of children including children similar to those portrayed in the pictures and those excluded.

I asked the clinician I was with what she thought of this oversight. She had communicated the same thoughts to administrators. The reply she received is that including children with disabilities or complex medical conditions might be viewed as exploitation.

Huh. I guess I never thought of it that way. But I don't agree. Children are unique.

The facility made an obvious effort to portray that. Why is portraying a child of a particular ethnicity not viewed as exploiting that ethnicity, but a picture of a child in a wheelchair is? Perhaps ableism is too new of a concept for "non-discrimination" efforts to include persons with disabilities. I suppose the ADA act is "younger" when compared to the Civil Rights Act and movements of the 1960's, but it's almost 20 years old!**

So, what to think of this commercial contest? What tone will it take? What will be the communities response? Will some deem it exploitation? It will certainly be interesting to follow.

**Please forgive me if I am a poor historian:)

Commerical Contest to air in July

A link to the story: http://www.aucd.org/template/news.cfm?news_id=3759&id=16

A brief reaction, today. I had a conversation last fall with a clinician regarding inclusion of individuals with disabilities in advertising. Essentially, the facility we were in had pictures everywhere of children with different colored hair, eyes and skin. Pictures of children of varying ethnicities, ages, and sizes. But not one picture of a child with a disability. Not one picture of a child with a complex medical condition. The facility is one that treats all types of children including children similar to those portrayed in the pictures and those excluded.

I asked the clinician I was with what she thought of this oversight. She had communicated the same thoughts to administrators. The reply she received is that including children with disabilities or complex medical conditions might be viewed as exploitation.

Huh. I guess I never thought of it that way. But I don't agree.

Children are unique. The facility made an obvious effort to portray that. Why is portraying a child of a particular ethnicity not viewed as exploiting that ethnicity, but a picture of a child in a wheelchair is? Perhaps ableism is too new of a concept for "non-discrimination" efforts to include persons with disabilities. I suppose the ADA act is "younger" when compared to the Civil Rights Act and movements of the 1960's, but it's almost 20 years old!**

So, what to think of this commercial contest? What tone will it take? What will be the communities response? Will some deem it exploitation? It will certainly be interesting to follow.

**Please forgive me if I am a poor historian:)

Running with Team Reeve in the windy city

I found a charity to run with! I signed up for the Chicago Marathon a few weeks ago. Then, one day for class, we went to the NeuroRecovery Network Clinic at Ohio State. We learned all about their high-tech rehab and the Christopher and Dana Reeve Foundation. I had heard their were some great videos on the site, so I decided to check it out.

While I was there, I saw a link to the right that said "26.2" and thought to myself, "that can only mean one thing!" I saw they were putting together a team for the Chicago Marathon 2009 and I had to find out more!

The Christopher and Dana Reeve foundation funds research and advocates to improve spinal cord injury treatment. This is the story (and video) that really motivated me to join Team Reeve: http://www.christopherreeve.org/site/c.ddJFKRNoFiG/b.4440581/k.8DF8/The_Chase_Is_On.htm

So I have taken on the challenge to raise $2,000 for the foundation. You can contribute at https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=307590&lis=1&kntae307590=92E8318DA70141D2AD9D4A5FB87DB8D5&supId=250391126

Finishing my first marathon, Columbus 2006

I've embarked on many journies in my running-life. From my first marathon to qualifying for and running the Boston marathon. Fundraising presents in new challenge for me in Chicago... and hopefully push me to a new personal best time! I can't wait!

Running in the 112th Boston Marathon in 2008! Achieving a lifetime goal:)

A group member shared this video with me for a class presentation.

http://www.youtube.com/watch?v=FGeHXP24E0E

It really touched me because running is such a big part of my life. I hope to be able to advocate for kids to participate in extra-curricular activities like this. I shared it with my fiance and he said, "Runners are just like that. They accept everyone no matter how fast you are because you all go through the same tough stuff." (he means the workouts and races) "It's the one sport where everyone can compete and belong."

He really just hit it on the head. Running is just this crazy goal-oriented thing. Everyone who runs has a goal. Some people want to run faster, set a new personal record, try a new event, lose weight, stay healthy, relieve stress and the list goes on. Achieving those goals is very fulfilling but through the years, I gained an appreciation for the success of others. watching a teammate, a friend, or now, in my life as a (soon to be) PT, a patient and their family, is even more rewarding. To this day, when I watch any kind of championship sporting event on TV (or even in movies) I start to tear up as I watch the person/people react to achieving their goal.

Running really does bring people together. I've learned this more as I've transitioned from running on a team to running on my own. I am so excited whenever I meet someone that I might be able to run with! It brings people from all different walks of life together; they have something in common now. And running may be the only thing they do have in common, but that is what is so great about it. Some of my best and longest friendships are with people I have met through running. Life goes on, paths take you different place but you always have that one thing in common. It's one of those "great equalizers." This story and video relate to just that:

http://www.cnn.com/2008/LIVING/04/02/heroes.mahlum/index.html and http://www.cnn.com/2008/LIVING/04/02/heroes.mahlum/index.html#cnnSTCVideo)

With this post, I really just wanted to share the above video because I feel like it just fits me. It's my two strongest interests all rolled into one. It's just one of those stories that hit me at the right time to keep that spark going.

Adapted programs are great. They really are. Their purpose of promoting fitness for persons who need accommodations and they do just that. But why should we limit ourselves? Not everyone needs or wants accommodations and kids can succeed in traditional sports if someone will just give them a chance.

Reaction to news story from England

In case you haven't watched the news clip, I've provided it below:

http://www.msnbc.msn.com/id/29391313/

This is a story from England that made the news because parents had a negative reaction to the a new BBC host of a children's program called CBeebies. The new host, Cerrie Burnell, has a physical disability and parents claim it is scaring their children.

I tend to think that news programs/stories/groups/etc always have inherent bias. I am glad to see that this group seems to oppose the ideas of the protesting parents. I am glad to see they interview a parent and son (in the video clip). The child, Isaac, doesn't think having only one hand would make a difference. I think his attitude is a reflection of his dad's attitude.

Earlier in the clip, the negative comments from parents flash across the screen; some are read by a narrator. One parent asks, "How do you explain to a three year old why the host has half an arm?" My immediate reaction to that questions is to tell them the truth! Children ask millions of questions! Especially about unfamiliar or new things. If they ask why someone has one arm or uses a wheelchair it is an opportunity to explain that everyone is different.

This news story reminds me of a recent question at the adapted recreation program I help with. Some of the kids have physical disabilities and instead of using the equipment such as walkers or wheelchairs during the program, volunteers support each child as they walk, jump, and play. One young girl, probably 10 years old, asked one of the younger girls, who has help to walk: "Why can't you walk?" I was helping the younger girl at the time and she didn't answer. After the older girl asked a few more times the younger girl looked at me and the older girl asked me "Why can't she walk?" It's hard to admit but I kind of froze! I know why the young girl can't walk, but how could I put it in terms her peer would understand and take advantage of the opportunity to explain that everyone is unique. So I explained that the younger girl needs help to move her legs and keep her balance. My answer either wasn't good enough for the older girl or she didn't believe me; I'm not sure but she asked the younger girl again, "Why can't you walk?"

I did my best to facilitate a conversation between the two girls, saying to the younger one "Why don't you tell her what you use to move around by yourself?" She responded "A walker or a wheelchair." The older girl said "Is it hard?" to which she responded "No" (with a tone than indicated she was thinking "why would it be?") The older girl was now satisfied and she ran off to play elsewhere. I felt like I handled the situation fairly well; certainly, I could have done a better job, but I'd like to think both parties benefited. The older girl learned the answer to her question and the younger girl (maybe) had a chance at self-advocacy.

In any case, I am interested to hear how others would have responded to the above situation and/or the news story from England. Please post comments here or email the listserve at AUCDTrainees@AUCD.ORG.

Physical Therapy Conference in Las Vegas, NV

In February, physical therapists and physical therapy students gathered in fabulous Las Vegas, Nevada for the Combined Sections Meeting of the American Physical Therapy Association. All three days were jam-packed with innovative presentations and motivating meetings. A few highlights come to mind.

The opening session focused on the continuum of care for individuals with life long disabilities, a task-force established by the APTA in 2005. The session was sponsored by all sections of the APTA and included case presentations by pediatric, orthopedic, and cardiopulmonary physical therapists; the most valuable part of the session was a testimony shared by a self-advocate, Janice Brunstrom, a pediatric neurologist with cerebral palsy. The session brought physical therapists of all specialties together and effectively communicated each sections contributions and responsibility in treating muscular, skeletal, and cardiovascular injuries for patients with life long disabilities.

I attended the pediatric section business meeting where I learned details regarding the first annual section on pediatrics’ conference January 10-13, 2009 in Orlando, Florida. The event will take place the week of the Disney Marathon, Half Marathon, and 5k with the theme “Goofy for Fitness.” Since fitness is one of my passions, I was so excited to hear this idea! The section is encouraging attendees to participate in the various running and walking events during the weekend. It sounds like a great event to promote physical therapists as both fitness enthusiasts and professionals trained in promoting fitness.

Another highlight of the conference was meeting trainees from multiple LEND programs. I was able to attend an interesting presentation and view an innovative poster created by Jenny Kronberg-Haire, LEND graduate and physical therapist at University of Nebraska Monroe-Meyer Center. I was also able to reunite with Erin Enright, Ohio State University LEND graduate, current LEND trainee and pediatric physical therapy resident at Oregon Health Sciences University.

Erin and Liz with Jenny and her creative poster

A few trainees found time in their busy conference schedules to share lunch and conversation. Jenny, Nikki Lokenvitz, physical therapy student and LEND trainee from University of Iowa and Lindsay Alfano, pediatric physical therapy resident and LEND trainee at The Ohio State University shared experiences, compared LEND program features, and discussed the conference sessions. It was wonderful to meet other trainees and learn about the diverse projects that are made possible through the support of LEND programs and creativity of their trainees.

Liz, Nikki, Lindsay and Jenny after lunch

I am eager to meet more trainees at the Policy Seminar this April 27th through 29th in Washington, DC. If you are interested in participating in this unique, contact your training director for more information or visit the AUCD's page: http://www.aucd.org/template/event.cfm?event_id=1468&id=379&parent=379#reserve

Resonse to news article: Patient with Down's syndrome starves in hospital

Link to article: http://www.guardian.co.uk/society/2009/jan/09/patient-starves-nhs

Global health is kind of a new interest of mine since I returned from Mexico. I found this article pretty shocking.

The first excerpt, about Martin Ryan reminded me of some of the children I saw in Mexico with evident feeding tube needs. I spent time at two different schools, one facility which strongly advocated for fitting a child with feeding difficulties or significant weight loss with a feeding tube and teaching the family to care for it. The other school did not consider feeding tubes to be an option because they felt the staff at the school and the parents would not be able to care for them. At the hospital in the UK, I find it unbelievable that the healthcare team was unable to communicate his basic human need for nutrients.


The other idea that popped into my head while reading this article is the many barriers to proper healthcare for individuals with developmental disabilities. From the story, Emma's death appeared to be a result of her inability to communicate with the hospital staff. Perhaps hospitals should require passing a competency or training in communication strategies with non-verbal patients. This could benefit all patients in these settings with communication challenges.

I'd like to think the healthcare teams at the hospitals I have been in would do a better job, but I also believe this story is a reminder not to assume that someone else has already asked the questions you want to ask a patient or family. It is a reminder that as a member of a healthcare team, we can, and must, be advocates for our patients, particularly in situations when their needs are not being met.

Self-determination: A reponse to discussion on trainee listserve

A great topic to generate discussion! I have two thoughts...

Self-determination, to me, seems to be a gold standard which many programs and services strive to practice. Every person or group that strives to practice self-determination has their own interpretation of how it is truly defined. One party may see self-determination as synonomous with free-will; another may see it as providing choices and allowing "self-determination" amongst the choices. Ultimately self-determination is limited to how it is defined by those who strive (or claim) to practice it's principles.

The second is that self-determination is more than just giving choices; it is a process. Self-determination is an innate desire in all of us, starting when we are young rebelious teenagers. We learn soon after this desire develops that each choice we make has its own set consequences, positive or negative. It may be that some programs that promote self-determination for persons with disabilities are trying to protect them from making decisions that will result negative consequences. It's kind of like a parent saying, "Would you like your curfew to be 11:00 or midnight?" It misses the point; the teen wants no curfew and wants to be trusted to decide when it is time to come home. As the teen matures, he may negotiate small decisions such as curfew time. He learns from his good and not-so-good decisions and eventually, the teen outgrows curfews and comes to be in charge of his own life and his own choices. That may be the piece that is missing from programs that claim to promote self-determination; they never allow the self-determined person to test the waters and learn from mistakes. Perhaps they never come to the point where the self-determined person is truly in control of her own life and choices.
Perhaps it is too simple of an analogy, but I do believe each of us desires our own degree of self-determination.

Be sure to see the AUCD message board at http://www.aucd.org/mb/index.cfm?which=trainee for original message.