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The Idea Exchange is a place where you can read questions and answers that other families have asked - or struggles that they have experienced and how they dealt with them. If you have a question, contact Jill at jills@uidaho.edu or click here to be taken to our contact page. We'll do our best to find out the answers!
Special Needs Prom in Region 1
Using Hand Held Devices (PDA's,
Smartphones)
Creating Teams that Work!
Weighted Blankets & Vests
Self-Determination & Family Support
Katie Beckett Program
Extended School Year
Special Needs Prom
Experience
We are lucky to be
able to share one family's experience with their daughter attending
a special community-wide event in the Post Falls/Coeur d'Alene area.
Liz Ricciardi, a Family Support Policy Council member, is like many
of us who struggle with the concepts of inclusion, opportunity and
advocacy. Sometimes all that matters is that our kids are
happy! Thanks again to Liz for sharing this story:
Last year, Nicole
and I attended the Tools for Life Conference in Boise. Part of
that conference was a dance for the youth who attended the
conference. Nicole had a great time dancing with individual
kids and groups of people. Boy, it was great to see her
engaged and interested. Nicole does not speak in a typical
way, but she was letting me know what a great time she was having!
That experience set the stage for the Special Needs Prom - an event
in our county sponsored by the Special Needs Recreation Program.
This organization does many many things throughout the year.
Nicole has participated off and on over the years and I wasn't sure
about attending a dance that is separate from what her classmates
attend - but I thought that Nicole doesn't care about all that.
So, we signed up and we did the only thing we could do next: go
shopping.
With Nicole's
sisters along, I tried to pick out a dress for Nicole that would be
age appropriate, which is tough because she is shorter than her
peers and she doesn't really seem to like clothes with lots of stuff
on them. She tends to pull things off that are extras or
strappy things around her neck. When I picked out a dress, my
teenage daughter immediately turned up her nose at it and had a few
choice words for me, along the lines of, 'are you crazy?' The
dress Becca picked out, Nicole's teenage sister, was the winner.
On the night of the dance, Nicole was ready to go. Her father
and I accompanied her, and proceeded to watch her dance with
everyone, and even be asked to dance by a very nice boy. He
told me, 'I think she's cute!' Nicole even made some other
girls upset by dancing with their dates. All in all, I can
only say that Nicole had a great night and enjoyed herself amongst
all the others who attended - many with disabilities and without.
Thanks to all who helped put on this fun night
Liz
Ricciardi,
Mother of 4
Family Support Policy Council Member-Region
1 -- Nov. 06
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Using hand held
devices to help plan your day!
Our thanks to Ashley
and her mom Louise for telling us about a device Ashley is using
everyday to make her work and homelife easier. Ashley has a
hand held device - some people call them Palm Pilots, Smartphones,
or their Blackberry, which are all different brand names.
Ashley has found that as a young adult with her own place and own
job, her hand held helps her remember to do important things.
Ashley uses a program
called 'Bug Me' which is a reminder program that her hand held
operates for her. She can set her hand held device to alert
her that it is time to do something - like clock out of her job.
Ashley likes her job and sometimes doesn't realize it's 5 o'clock.
Louise let us know that the 'Bug Me' program can be tried out to see
if it's something you like before you buy it. You can visit
the company that makes the Bug Me program online by
clicking
here.
Louise let us know of
another helpful hint that Ashley likes to help with grocery
shopping. They found a grocery store that offers online
shopping help with menus, shopping lists, store sales and more.
Many grocery chains now offer things like this - see below for a
list of links to check out. Ashley can adapt the shopping list
to reflect what she usually needs - or take out what she doesn't
need at all. For example, she took off Pet Food from her list
because she doesn't have a pet. Then she prints off the list
and uses as her list when she goes to the store. Louise and
Ashley like this because Ashley can adapt it and it helps Ashley
make sure she gets everything she needs. If you wanted you
could even load the list into a hand held device - but Ashley
doesn't like that. It would be a lot to scroll through while
shopping - and the paper version works just great!
HEB (Here Everything's
Better)
www.heb.com/mealtime/groceryList.jsp
Piggly Wiggly
www.pigglywiggly.com/cgi-bin/checklist
Rosauers
www.rosauers.com/shopping/
Albertsons
www.albertsons.com/shared/plan/default.asp
Our thanks to
Ashley & Louise for sharing with us!
Fall 2006
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What makes a team work well?
In my opinion I would first start by defining the term "team." A team
could be any group involving more than one person. It could consist of
friends, family, organizational members, or any other combination utilizing
two or more persons.
With that thought in mind, the first thing I would say to help "teams" work
better would be overall mutual appreciation combined with good communication.
When I say mutual appreciation I mean looking at things from the others’
perspective and being honestly appreciative of each person and what they have
to contribute to the situation. I do not mean looking at things from what
you perceive to be the other’s view, but what they are really seeing from the
experiences they have had in their own lives.
For instance, if a child does something that helps a parent and if that parent
will let the child know how much they appreciate the effort, it not only is a
polite thing the child has been shown but also a good self-esteem builder
for the child. The child will look for more opportunities to make positive contributions. If a parent is working on a "team" with professionals, when the professionals on the team acknowledge the areas of expertise the
parent may have by living the situation instead of the knowledge that comes
from textbooks or outside the home knowledge, teamwork is being built. In turn, a parent can show appreciation for the professionals on that same team by letting them know that the fact they are attempting to get input from the parents is
appreciated.
When I refer to communication it means listening not only with the ears but
also with the heart. How easy is it to hear what someone says and not let it even register as important? People do it all the time. For instance, when I join a group as a parent and the meeting includes professionals, I let them know that I do have e-mail but cannot open attachments. It usually takes me reiterating several times
before I find someone in the group who actually meets my basic need
as a member of the group. How hard is it to copy and paste information into
an e-mail or snail mail the information? It is not a common request so it is
often passed over. When my need is acknowledged and the information actually comes in the format I need, I appreciate it and I try to respond with a Thank You to the person who has met my needs. To me this is communication on a level where
the needs of the team are known and as a consequence, more work is able to be done far more effectively. Feelings are positive when everyone listens and tries to meet the needs of the team members involved.
This works the same in families. How often do children tell parents of a need and parents are so busy they don't even hear what the child is saying? The child thinks they are not loved or appreciated and they in turn refuse to listen to and obey parents. These are just my own personal opinions and others may have other thoughts that may be entirely different than these. I would encourage the sharing of
those opinions in this same format.
Joann Grimmett,
Mother of 5
Family Support Policy Council Member-Region 4 -- Nov. 05
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How can I get
more information on weighted blankets and vests?
Weighted blankets and vests are available on the market and can often provide relief for people who have difficulty with sensory integration issues. For example, some children with Autism or other sensory processing disorders respond very well to the deep pressure feeling of weighted blankets or vests. One story we've heard lately came from us from Region 2, where our Family Resource Center asssisted a family to buy a blanket. They can be a bit spendy, but for this family - the cost was well worth it! The child felt secure under the blanket and slept soundly - while the rest of the family could sleep as well! Here are some links to check out including a pattern so that you could make your own - this pattern is for a small blanket. Some inventive people down in Region 7 share this pattern with us! Thank you! For more information about making your own, go to the internet and type "weighted blankets" in the search engine. Even eBay has them! You will be suprised at how many resources there are out there. We are not endorsing any particular company or style, this is for you to consider only!
Weighted Blankets Click here for pattern
http://www.quietquilt.com/index.html
http://www.bright-start.com
Weighted Vests
http://www.bright-start.com/
http://search.ebay.com/
Jill Smith, Family Resource Specialist 11/05
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How do the ideas of Self-Determination and Family Support work together?
Self-Determination is the idea that all individuals have the right and responsibility to have their voices heard and understood when it comes to how each individual wishes to live their lives. Regardless of whether a person has a disability or not, I think we all wish to our lives how we choose - but sometimes people with disabilities do not gain access to this type of thinking. But, a change in this country is currently underway. The change involves encouraging people and communities to see people with disabilities as real people who have a voice about what they want out of their lives, who they want to spend time with, how they prefer to receive supports and from whom... and so on. Many states are now, in fact, changing how program funds can be spent, who has control over spending, and how support providers are paid in order to offer more self-determined programs. This trail of dollars sometimes causes confusion among people who use state programs.
The reason for this is simple. When parents hear about or read about the ability to have more individualized control over how dollars are spent and what kinds of services can be accessed, they say, "Sign me up!" The rub is, children do not have the same kind of voice as adults should have in terms of how they wish to live their lives. 'Family Support' as a state program was designed to be of assistance to families who experience disabilities in order to help keep them strong and well-functioning. It is important to remember that Family Support doesn't just mean parents and children under 18. Family Support is about helping families, which applies to all of us - brothers, sisters, sons, daughters, moms and dads just to name a few!
The ideas of Family Support and Self-Determination are linked. As states and communities continue to create programs which better individualize and respond to the unique needs, interests and dreams of people - families and adults with disabilities will lead stronger and more self-determined lives.
Jill Smith, Family Resource Specialist 9/05
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What is "Katie Beckett" and where can I get more information?
Katie Beckett was a girl who had a significant disability and her parents made too much money to qualify for, at that time, typical disability supports in her state. Because of that, her parents had to consider that their only option was to place her in a facility (even though that would cost significantly more to the state). This situation occurs every day in every state of the union. Federally, our legislators developed a program that was named for Katie, whereby states could choose to offer families that made too much to qualify for social security or medicaid - a way to get help and keep their kids at home. What this means is that not all states offer this program. For example, Idaho does - Washington State does not.
It is very important to understand the eligibility requirements! First, a child must have a developmental disability - who makes that decision? - Health and Welfare. Second, their family CANNOT qualify for social security or medicaid on their own - this means they make too much money to get assistance based on their income. Third, remember that Katie was placed in an institution because of costs and the program was developed to keep kids at home. To qualify for the program, a child has to 'require' an institutional level of care. Who makes that decision - your physician - he or she must state that it is medically necessary that without supports, your child would require an institution.
This program is a WAIVER PROGRAM. Waivers are something you need to understand. Without waivers, parents would have far fewer choices for their children. Just as critical - our kids grow up. Waivers provide adults with disabilities with the ability to stay in the homes of their choice rather than having to imagine their lives within an institution. LEARN MORE about these crucial programs!
Katie Beckett, the program, is administered by Idaho Health and Welfare. As a parent of a child with a disability who has been part of this program for several years now, I found it the most helpful to go to my local Health and Welfare office and speak with the Developmental Disability Program staff - some regions may call it the Child Development Center or some may call it the ACCESS Unit. Here is the link to Health and Welfare's website and the criteria for this program is listed there. Because of the medical / formal jargon it can be a bit confusing. Every county's Health and Welfare offices are listed in our Resource Database as well.
Some of the things that this program provides: Medicaid Card (medical care, prescriptions, vision, dental), Personal Care Services (this is like Home Health Care - certified nursing assistants, nurses and evaluators come to your home to assist your child - just know - there aren't enough providers across the state from what I have heard from parents!), ESC Service Coordination (this can help coordinate the resources you need for your child). This list is not meant to be exhaustive, nor is it any kind of guarantee. Parents tend to tell other parents about this program, and they may describe something like Personal Care Services to you, but you're not sure what they mean or how to access it. This is just an overview from one parent to another.
Jill Smith, Family Resource Specialist 4/05
We just went through the Katie
Beckett process for our two children. The section above does not
describe our experience. We certainly had to obtain all of each of
our children’s medical records, from all of their various doctors.
Their pediatrician, however, was not asked to and did not make a
determination that they required an ICFMR level of care. H&W
administered a SIB-R for each child and the ICFMR determination was
based on their SIB-Rs showing they were at or below 50% of age
level. Then the determination was made, based on the SIB-R, by a
H&W nurse. They may have had an M.D. associated with H&W sign off
on the determination (I know they do that on IFSPs), but it wasn’t
our doctor.
Jon Meyer, Parent and member of
Region 2 FAB, 5/06
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What is Extended School Year?
Extended School Year - or ESY - for short is a service accessed through Special Education services at your school. Here is a link to a site I found through NICHY where I found ample information outlining ESY. In short, a student who receives special education may qualify for ESY if and only if the student will lose a significant amount of information over the summer. As a result of this loss, they would have to RELEARN the information at the start of the next school year. ESY is not designed to learn new information! But maintain what has been acquired. All ESY goals are based off of the current IEP and the ESY goals are often written as an addendum to the IEP. ESY is an individually designed program and it is functionally dependent on districts having access to staff who can deliver this service. My best advice to you is to work as a team with your district to maximize how your child can best maintain his or her learning. If you are struggling, another great resource is
Idaho Parents Unlimited or IPUL for short.
You do have to sign up for ESY in the spring - so don't wait to ask about it in May! I'll ask some of our Parent Reviewers what their experience has been with ESY and we'll post some of their thoughts as well - check back with us often.
Jill Smith, Family Resource Specialist 4/05
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