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Archive for the ‘Surveys’ Category

OPWDD Survey On Strengthening The System – Make Yourself Heard

Thank you to Margaret Puddington for sharing this information:

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Dear Friends and Colleagues:
 
As you know, there are many changes underway within our service delivery system. Because of your involvement, reforms that have been implemented or are in development now, are making our system stronger every day. We want to keep our progress going, and continue to empower all stakeholders in a meaningful way.
 
OPWDD is currently reviewing all of the laws, regulations and memorandum that exist across our system and impact our work – and we need your feedback on any changes that you believe are necessary to better meet our mission of enriching the lives of people with developmental disabilities through our four primary goals: home, health, meaningful relationships and activities in the community. 
We have set up an online survey, which can be completed anonymously. Upon viewing the link, you will see that one survey is for individuals and advocates, while a second is written for service providers (direct support professionals, clinicians, organization management) and quality improvement staff.
 
For individuals and families, we are interested in knowing what requirements prevent you from having the life you want, as well as the requirements that have value to you and should not be changed. For service providers, we want to know what requirements prevent you from providing quality person-centered services, as well as the requirements you value most in your work.
 
Thank you in advance for your thoughtfulness, and taking the time to participate in this important survey. Please share this information with friends, colleagues, and loved ones. Anyone without internet access can call 518-474-3625.
 
Sincerely,
 
Commissioner Burke
 
P.S. Communication is critical to our collective success, and OPWDD’s Facebook page is a great place for individuals, family members, employees, advocates, and other stakeholders to exchange thoughts and ideas. Please feel free to join the conversation.

New Poll on The Foorce

See the right sidebar for my new poll. I’m interested in your opinion while I work on my latest rant against health insurance, waiting rooms and “special needs” practitioners. Recently it seems like anyone who has seen a disabled patient before dubs themselves a specialist – until they meet James, that is.

PS, the results from the last poll are below – now I’m interested to see how much more waiting you are willing to do once you’ve taken the time off and made the trek to the office.

How Long Do You Think Is Appropriate To “Hold, Please” After The Receptionist Answers The Phone?

Answer Votes Percent
up to 5 minutes 19 40%
1-2 minutes 14 29%
5-10 minutes 11 23%
10-20 minutes 4 8%
over 20 minutes 0 0%

New Poll Added – Are You Interested In Online Meetings?

I am looking into adding a chat feature to my website, but before I go to the trouble I thought I would check and see if anyone was even interested.

With a chat option I was thinking that people could see who is on The Foorce and chat with each other if they like, but more importantly that meetings could be hosted online for people who are unable to make meetings in person on Friday mornings. Not to mention there could be more meetings hosted remotely by more amazing speakers!

Make sure to log your vote in on the right sidebar – if there is enough interest The Foorce Chatroom could be up and running by the end of the month!

The First Foorce Survey Is Almost Over!

I am about to change surveys so if you want to put your two cents in on this one now is the time! Just click the link at the top of the right sidebar to start.

And, keep an eye out for the first Foorce contest!

Hoping to post more tonight, it’s been a busy weekend.

Until then…

Another Post About Balloons – What Would You Do?

July 13, 2011 3 comments

After reading this post make sure that you weigh in on the newest poll, posted in the right sidebar. I’m really curious about this one because even though I feel okay about how we handled it, I thought through several different scenarios and still feel like there was more than one “right answer” here.

Last weekend at the Natural History Museum sprinkler meetup we were busy having a good time splashing about when other people showed up. The nerve. Not just other people, but other people with balloons. Seriously, can we escape the freaking balloons for one day? One woman, whom I shall refer to from here on out as The Ringleader, brought a pump-your-own-and-let-it-squeal-through-the-air-deflating balloon kit, and was sharing it with any interested child. Including my 2 yr old. At first James didn’t notice – I thought, maybe this will be okay; these balloons look a little different and they are sailing through the sky, no chance of popping. Then one popped.

All hell broke loose, James started screaming and ran out of the sprinkler area. I corralled him onto our towel and offered him books, snacks, cash, but all he wanted was for me to “tell that lady to put her balloons away!” Though he was 20-30 feet away from the action, he was impossible to calm down and continued screaming loudly with his hands over his ears. Damn, people were starting to stare at us. I started having Central Park Zoo flashbacks (see Balloon Vendors post). I offered for James to sit on a nearby bench, about 20 feet further away, and read a book. He tearfully complied but another %$#@ing balloon popped and he went crazy on the bench, still perfectly audible to the growing crowd of curious onlookers.

At this point my 2 yr old daughter raced down from the sprinkler area with her hands over her ears to comfort James. Watching them both “sit out” on the bench with their hands over their ears, one voluntarily and one empathetically, I felt like I should be doing something. I watch The Ringleader gleefully leading children around like the Pied Piper. I said irritably to my husband, “What is she thinking bringing balloons to the sprinklers? Couldn’t she be a little considerate of other people’s situations?,” to which he said something about balloons outside and it being a free country and blah, blah, blah. I didn’t have time for reason – my kids were missing out on sprinkler time! We were having a meetup for special needs children, for crying out loud! Come to think of it, where were all of the other balloon phobes?

I thought about explaining our situation to The Ringleader and asking her to put the balloon pump away for a bit. Though many other parents were openly staring at my blubbering 10 yr old, she had not so much as glanced in our direction – too focused on her balloon magic, I guess. But then I looked at the crowd of excited children she had racing around behind her and I felt my indignation deflate (pardon the pun). My husband hustled James over to another bench, about 50 feet further away and out of sight of the balloons. I mean, why should everyone else’s fun be ruined so that James could play in the sprinklers balloon-free, right?

Then I watched my 2 yr old chasing the balloons, her hands still clamped firmly over her ears in silent support of her brother. I could tell she was torn between sharing in the same carefree exhilaration as all of the other children and comforting her very upset brother, who was far, far away from the balloons.

All joking aside, this is not an easy thing to watch your toddler struggle with. In fact, it makes my heart ache a little that she is learning this kind of empathy at such a young age. I don’t want her to see balloons  and feel a sense of panic, anxiety, unhappiness, worry or tension. I don’t want her to step on a sheet of bubble wrap at home and be chastised as James runs into his room hysterical. At 2 years old she should be able to see Curious George floating in the air with 50 balloons and not think he is scared because the balloons might pop!

We are not “soft” on James’s phobias – just last week I was bragging about how many he was able to overcome on our beach vacation, with a little coaching (and some neat props!). But balloons, popping, potential popping, things that sound like popping – this phobia has only gotten worse over the years and there seems to be no stopping it. It’s right up there with blood pressure cuffs and taking the elevator alone. Does it affect our daily life? Not really. Did my 2 yr old accidentally pop a plastic bag today and send James into a panic for the rest of the afternoon, in which he hid under the covers and cried every time he heard a noise (a book dropping, broom handle hitting the wall, toys crashing into a box, door closing too loudly)? You betcha.

So I’m passing the buck this time. What would you do if it was your child at the sprinklers? I know, you’ll need to use your imagination in a big way. But seriously, I’d like your opinion. Vote for what you think is the best answer in the poll to your right, or check Other and leave your potential solution in the Comments section.

Opportunity For Parents Of Autistic Children To Be Featured In A Documentary

I received an email yesterday that I thought I would pass along. Parents are currently being invited to be interviewed for a documentary about autism. Part of the announcement is copied below, along with a link containing more details:

The main focus of the documentary is to learn about the issues created for parents and families as a result of caring for a child with autism. We invite all parents of any child with autism to participate, regardless of where the child is on the spectrum (ex, low or high functioning).  It is a requirement that fathers be a part of the interview. Parents do not necessarily have to be together, although we are interested in having both parents participate. All replies are strictly confidential.

The following groups of parents will be examined in this documentary:
1)      Group 1 = Parents, 27 years old and younger, who have just
recently diagnosed that their child is on the autism spectrum.
2)      Group 2 = Older parents, 28 years and older, with a young child
recently diagnosed on the autism spectrum.
3)      Group 3 = Parents of a child with autism currently at the age of
puberty.
4)      Group 4 = Parents of adults with autism – whether raised at
home or in a residential facility or institution
5)      Group 5 = Parents of any age of undiagnosed children with a
strong suspicion that the child is on the spectrum
6)      Parents of any age of multiple children on the spectrum,
regardless of age

Click here for more information about the documentary. Please have any parent interested contact Alexandra Meis, the Autism Treatment & Advocacy Center Coordinator at ameis1@bronxleb.org or Autisticdocumentary@gmail.com.

 

Thefoorce.com’s first survey is here!

I would be very grateful if you would take my first ever foorce.com survey – it is on the right sidebar under Click Here.

It will help me to decide which directions to pursue first as this site grows, and will hopefully help you in the process!

Your input is extremely valuable to me, and anonymous – please answer what questions you can and spread the word to others in the special needs community. Thanks in advance for your time and effort!

PS – There will also be a weekly poll to the right – after you vote you can see the results. Polls will often be related to a recent or upcoming post.

To Bus or Not to Bus…. please help answer the question!

April 13, 2011 8 comments

The wheels on the bus go round and round and round and round…. or sometimes not at all if you are taking a bus in NYC. Often times the right school for your child is not walking distance, and in some cases an hour commute twice a day isn’t going to work out for one reason or another. When you are in the city, and when your child has special needs, they probably aren’t going to walk or bike or subway back and forth on their own.

I have been very fortunate so far and have not had to put James on a bus. When I lived in Ohio I drove him back and forth each way on my way to school, and in VA when I worked much longer hours I had a lot of help from Ryan getting James to and from school. In NYC we have been fortunate enough to live 7 blocks or less from James’s school, so it has been an easy decision to spend a little extra time walking with James and getting some exercise, too. Except on the days when I have 1, 2 or 3 whiny kids and a stroller full of groceries. And it’s raining.

We are currently considering moving north by 30+ more blocks. Not walking distance anymore. Totally doable by subway, but much less convenient for Ryan and I. Ryan would have a much longer commute so stopping to drop off James would add even more time to it. I don’t anticipate dragging two toddlers downtown on the subway once or twice a day to get James would be pleasant either, though I haven’t ruled it out. That leaves me to struggle with the bus issue.

I admit it. I have a “bus issue.” Not without reason, though I may sound like a hypochondriac to some people, including my own family. The pros to having James take the bus are obvious: less effort and time on our part in getting James where he needs to go. The cons I am sure of: a much longer trip to and from school for James, resulting in a longer day away from home. Then there are the potential cons: falling up or down bus steps and injuring himself or others, getting bullied on the bus, not getting off at the right stop one way or the other, having an accident on the bus because the trip is too long and nobody made him go to the bathroom before leaving school, less face to face time with teachers because we don’t do drop off or pick up anymore, a more tired child arriving at home to start homework, resulting in more tantrums and more stress at home.

The potential cons, as with many issues, are what really scare me. Many of the potential cons need only to happen once in order for something really bad to have happened, and with a special needs child the likelihood of them happening more than once is much greater. Also, other people’s stories. I have heard so many stories, mostly of the horror variety, about special needs children and buses I cannot even count them. As my husband likes to point out, most people don’t walk around talking about the nice bus ride their child took to school that day, so I am asking you to. Please share with me your stories and opinions, good or bad, regarding NYC school buses. I am especially interested in hearing from people who have had direct experience in putting their special needs child on a bus for special needs students in Manhattan, but welcome any related stories and comments.

I would love to be able to make a rational, educated decision about the bus. So please, share your bus stories in the comments section. Every bit of information is helpful, and I plan to post my findings as I look further into the “bus issue.”

To bus or not to bus?