We have all been at the doctor for what was supposed to be a simple blood draw or appointment that turned into something that resembles a WWF match. Most kids that have special needs rely on knowing what is coming up next and when things get thrown off, even a little bit, it's really hard to get our kids back on track and focused.
The treatment professionals at the Johnson Center for Child Health and Development and also the Autism Research Institute have come up with a series of videos to help prepare our children for some aspects of medical care.
There are a series of three videos, all uploaded to You Tube, that tackle things such as blood draws, Medical play and simple ways to position for comfort during such procedures. They offer advice that you can do at home and ways to include your doctor's office in making it an experience that will work for everyone involved.
Here is the link for the videos:
Medical Support Videos
Utah's Family to Family Health Information Center
Thursday, April 23, 2015
Friday, June 13, 2014
This is your chance to let Medicaid know what is important to you!
The Medical Care Advisory Committee (MCAC) will be taking public testimony on the Medicaid Budget on Thursday June 19, 2014.
This is your opportunity to testify about any concerns you may have with current Medicaid services or any additional services that you would like included in the budget. It is also your chance to share any ideas you have to make the program work better for you, your family, or your friends.
The meeting will be from 4:00-6:00 pm in room 125 at the Cannon Health Building - 288 North 1460 West, Salt Lake City. Public Testimony/discussion regarding the Medicaid budget will be heard beginning at 5:00 pm or earlier if agenda items are completed ahead of schedule.
Thursday, December 12, 2013
Happy Holidays from Utah Family Voices!
The Twelve Days of Christmas
(Special Needs
Version)
·
On the first day
of Christmas, the good Lord gave to me: a
child with special needs.
·
On the second day
of Christmas, the good Lord gave to me: a
heart full of love for my child with special needs.
·
On the third day
of Christmas, the good Lord gave to me: an
ache in my heart and a heart full of love for my child with special needs.
·
On the fourth day
of Christmas, the good Lord gave to me: a
tear in my eyes, an ache in my heart and a heart full of love for my child
with special needs.
·
On the fifth day
of Christmas, the good Lord gave to me: an
unsuspected strength for the tear in my eyes and the ache in my heart and
my heart full of love for my child with special needs.
·
On the sixth day
of Christmas, the good Lord gave to me: a
ray of hope, an unsuspected strength for the tear in my eyes and the ache
in my heart and my heart full of love for my child with special needs.
·
On the seventh
day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the
tear in my eyes and the ache in my heart and my heart full of love for my child
with special needs.
·
On the eighth day
of Christmas, the good Lord gave to me: supportive
friends and family, a sense of humor, a ray of hope, an unsuspected
strength for the tear in my eyes and the ache in my heart and my heart full of
love for my child with special needs.
·
On the ninth day
of Christmas, the good Lord gave to me: remarkable
doctors, teachers, and therapists, supportive friends and family, a sense
of humor, a ray of hope, an unsuspected strength for the tear in my eyes and
the ache in heart and my heart full of love for my child with special needs.
·
On the tenth day
of Christmas, the good Lord gave to me: an
appreciation of small accomplishments, remarkable doctors, teachers and
therapists, supportive friends and family, a sense of humor, a ray of hope, an
unsuspected strength for the tear in my eyes and the ache in my heart and my
heart full of love for my child with special needs.
·
On the eleventh
day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments,
remarkable doctors, teachers and therapists, supportive friends and family, a
sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes
and the ache in my heart and my heart full of love for my child with special
needs.
·
On the twelfth
day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation
of small accomplishments, your remarkable doctors, teachers and therapists,
your supportive friends and family, your sense of humor, your ray of hope, your
unsuspected strength for the tear in your eyes and the ache in your heart and
your heart full of love for your child with special needs.
Wednesday, September 4, 2013
Utah's centers for independent living - more than just independence!
I'll be honest. I forget about what a great resource we have in our independent living centers! What is the first thing that comes to your mind when you think independence? Maybe housing? Maybe classes on managing your own finances? They are so much more than that.
All centers for independent living or CIL's are non-profit service and advocacy organizations. All CIL's serve people with disabilities regardless of age, gender, race, disability and religion.
Through these services, education and advocacy, the centers for independent living promote a philosophy that everyone has a right to make their own choices about independent living and participate fully in the community as a full and equal citizen. To find out more about the history of independent living centers, here is a link to the National Council on Independent living.
Some of the different programs listed below are not applicable to all the independent living centers in Utah so call the one in your area to ask about their specific activities.
Autism support/mixed disability support - held to offer support to individuals, family members or anyone with a personal interest.
Youth program activities - usually ages 14-30 for empowering people with disabilities in every aspect of life.
Classes - include things from Advocacy to Dating: manners and hygiene
Community Integration activities - take individuals with disabilities around to local venues out in their community
Peer to peer support - Arranged individually as needed. Receive support and training from thos that have "been there; done that".
All centers for independent living or CIL's are non-profit service and advocacy organizations. All CIL's serve people with disabilities regardless of age, gender, race, disability and religion.
Through these services, education and advocacy, the centers for independent living promote a philosophy that everyone has a right to make their own choices about independent living and participate fully in the community as a full and equal citizen. To find out more about the history of independent living centers, here is a link to the National Council on Independent living.
Some of the different programs listed below are not applicable to all the independent living centers in Utah so call the one in your area to ask about their specific activities.
Summer programs - providing life skills for youth with disabilities in the community, usually meets 3 times a week.
Autism support/mixed disability support - held to offer support to individuals, family members or anyone with a personal interest.
Youth program activities - usually ages 14-30 for empowering people with disabilities in every aspect of life.
Classes - include things from Advocacy to Dating: manners and hygiene
Community Integration activities - take individuals with disabilities around to local venues out in their community
Peer to peer support - Arranged individually as needed. Receive support and training from thos that have "been there; done that".
Loan bank for assistive technology - depending on demand, they can have special recreation equipment to high tech options that are designed to promote independent living.
Staff will meet with clients individually to do an intake, independent living planning and service coordination as needed.
All activities/programs are a low fee to make it accessible for all!
Centers for Independent Living
Box Elder, Cache, and Rich Counties | |
OPTIONS for Independence
Northern Utah Center for Independent Living 106 East 1120 North Logan, UT 84341 Voice: 435.753.5353 - Relay: 711 Fax: 435.753.5390 Email: jbiggs@optionsind.org |
|
Davis, Morgan, and Weber Counties | |
Roads to Independence
3355 Washington Boulevard So. Ogden, UT 84401 V & TTY: 801.612.3215 Fax: 801.612.3732 Email: ilc456@aol.com Website: tri-county-ilc.com | |
Salt Lake, Summit, and Tooele Counties | |
Utah Independent Living Center (UILC)
Wasatch Front Center for Independent Living 3445 South Main Street Salt Lake City, UT 84115-4453 V & TTY: 801.466.5565 Fax: 801.466.2363 Email: uilc@xmission.com | |
Utah, Wasatch, Juab, and Sanpete Counties | |
Ability First
491 N. Freedom Blvd. Provo, UT 84601 V & TTY: 801.373.5044 Fax: 801.373.5094 Website: http://abilityfirstutah.org/ | |
Carbon, Daggett, Duchesne, Emery, Grand, San Juan, and Uintah Counties | |
Active Re-Entry
Eastern Utah Center for Independent Living 10 South Fairgrounds Road Price, UT 84501 V & TTY: 435.637.4950 Fax: 435.637.4952 Email: active@arecil.org | |
Beaver, Garfield, Iron, Kane, Millard, Piute, Sevier, Washington, and Wayne Counties | |
Red Rock Center for Independence
Southern Utah Center for Independent Living 515 West 300 North #A St. George, UT 84770 V & TTY: 435.673.7501 Fax: 435.673.8808 Email: rrci@rrci.org | |
Friday, August 2, 2013
What is the Medical Home Portal?
Medical Home Portal is a great place for parents and professionals
to get help for children and youth with special health care needs. Professionals can get reliable and useful
information and parents can learn more about their child's diagnosis and have a
place to turn for information about coordinated care and access to quality
health care.
When my child was first diagnosed it was an incredibly
chaotic and scary time. There was really nobody in my family that had
been through a tough medical diagnosis. Some of my early questions were, What
did this all mean? How will we afford this? Where could I turn for all
these answers.. and more!? There is an article titled A
new (or old) diagnosis - "you are not alone" that has some
great information that helps me to this day about caring for my daughter.
Knowing that you are not the only one, has been one of the biggest
supports that has gotten me through tough days.
The portal currently has over 500 pages of content and
resources, over 3800 links to other reliable and valuable web sites or
downloadable information and much, much, more.
They are actively writing more content that is uploaded often to keep
current with the changing system. If
there is something that you are not able to find they have a contact and
feedback link to ask questions or leave comments.
My daughter requires
a wheelchair for mobility and I found the article wheelchairs
and adaptive strollers really helpful in learning about different
types of options there are. She is also starting to be more interested in
using assistive technology for choice making and hopefully one day for
communication. The article titled augmentative communication is a great place to start if you are
interested in checking into assistive technology.
I did and still do to this day have questions, nearly every
day, about caring for my child. Now we are on to subjects that deal with
transition, equipment, education and more.
I feel very blessed to know that there are so many people out there
dedicated to helping me find the things that will aide my daughter into having
the best quality of life possible.
To find out more information about Medical Home Portal
please visit their website at www.medicalhomeportal.org.
Wednesday, June 5, 2013
ADA and Parking - Did you know?
This is something new that Tina found when researching for an article she is writing for www.medicalhomeportal.org. This is specifically for Salt Lake City but we encourage you to find out in your local community if there are similar ordinances.
Transportation - Parking for the Disabled (ADA)
All vehicles displaying a disable person’s license plate or disabled person’s placard, and transporting a disabled person, may be parked at any city parking meter without charge for up to two hours. The plate and placard are available from the Utah Department of Motor Vehicles. In addition, these same vehicles may park for up to two hours in the following restricted zones: freight loading, passenger loading and time limited parking zones. Vehicles may not be parked in areas where official signs or traffic markings prohibit stopping, standing or parking, including areas reserved for emergency use and bus stops.
All information was taken off the SLC website: http://www.slcgov.com/transportation/transportation-parking-disabled-ada
Tuesday, January 15, 2013
Dependent with a Disability Exemption tax form!
Hello!
We at Utah Family Voices have received several calls with in the last few weeks inquiring about who was eligible for the Dependent with a Disability Exemption and how to get the form (TC-40D). This tax exemption has been unavailable for a couple years and I'm willing to bet some schools are out of practice getting the forms out to parents. I happened to have my child's IEP the first week in January and had her teacher sign in then. If you have not heard anything from your child's school feel free to follow the link below and take in the form to have it signed.
Under Part 2, Eligible students with a disability, there are some restrictions. The requirements are detailed on the second page, but may not be used for students with SLD (specific learning disabilities), ED (emotional disturbances), or SLI (speech and language impairment), due to legislative restriction, which is also listed on the form under Part 2.
Link to the tax form: http://tax.utah.gov/forms/current/tc-40d.pdf
Please call Utah Family Voices at 801-272-1068 if you have any further questions.
We at Utah Family Voices have received several calls with in the last few weeks inquiring about who was eligible for the Dependent with a Disability Exemption and how to get the form (TC-40D). This tax exemption has been unavailable for a couple years and I'm willing to bet some schools are out of practice getting the forms out to parents. I happened to have my child's IEP the first week in January and had her teacher sign in then. If you have not heard anything from your child's school feel free to follow the link below and take in the form to have it signed.
Under Part 2, Eligible students with a disability, there are some restrictions. The requirements are detailed on the second page, but may not be used for students with SLD (specific learning disabilities), ED (emotional disturbances), or SLI (speech and language impairment), due to legislative restriction, which is also listed on the form under Part 2.
Link to the tax form: http://tax.utah.gov/forms/current/tc-40d.pdf
Please call Utah Family Voices at 801-272-1068 if you have any further questions.
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