Our mission

Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
Utah Family Voices assists families of children with special health care needs/disabilities and the professionals who work with them. Utah Family Voices is staffed by parents of children with special health care needs who have experience and expertise in navigating the maze of services and programs.

Thursday, December 27, 2012

Fun new behavioral resource!

Behavior, Attachment, Development....Through swim lessons!
  • Parent/Child swim classes
  • $85 for the session
  • 1 session = 4 weeks
  • classes held once a week for 4 weeks
  • Currently held in Davis and Salt Lake counties!
Kristal James, LPC founded Aquaire in 2011. She has a son who has benefited greatly from early interventions and has been working professionally to help children with unique needs. Aquaire was originally created with the Aquatics program in mind since Kristal had spent 8 years teaching children to swim prior to working as a Licensed Professional Counselor (LPC). Kristal has often been in a position of needing to decide between recreation and treatment options for her own son. Kristal understands the care, concern and commitment involved with balancing family life, interventions, time, money and other stressors. There is a delicate balance between providing for a loved one who needs special attention while providing adequate love and support to those in the family who may not need as much attention and care. Because of the nature of her work, she has also heard several parents report having to make decisions like donating plasma to pay for things like a swim suit for a child because the majority of his or her income has to go to pay for children's psychotropic medications. Determined to find a way to intervene with a cost effective, time effective and normalizing approach, Aquaire was born. Currently, Kristal is dedicating her time and money made from her private practice to the development and success of Aquaire.
Knowing these kinds of decisions are common for families with children who need extra time and attention; Kristal began developing Aquaire. By utilizing everyday activities and coupling them with therapeutic strategies; it is intended to help a child learn secondary skills while mastering emotional, social and behavioral skills. An example exists with the swimming. It is necessary for a child to remain calm in order to learn to swim. Calmness during challenges is also a skill often sought after in counseling interventions. Although this skill takes time to learn (back to back sessions are encouraged); Aquaire hopes to teach secondary skills simultaneously taking full advantage of the needed time.

For more information check out their website at www.aquaire.org


Friday, December 7, 2012

The Legal Impact of DSM-5: Will It Affect Children With Aspergers?

I'm sure by now you have heard in the news about the change that is happening to the DSM-5 (an acronym for Diagnostic and Statistical Manual of mental disorders).  They will be fading out the diagnosis of Asperger Syndrome and including it in the spectrum of Autism or Autism Spectrum Disorder (ASD).

Tina found this great article regarding the DSM-5 that will be out in May of 2013 and how it will affect kids currently diagnosed with Asperger Syndrome.
Here are some highlights,


Asperger’s Syndrome will no longer be a diagnosis

The task force stressed that anyone with a prior diagnosis of Asperger’s Syndrome under the DSM-4 criteria would still meet the diagnostic criteria for ASD under the new DSM-5 criteria.

Be Prepared

As the new edition of the DSM becomes available, parents are encouraged to discuss with their child’s school, current providers, and insurance carrier to determine how the change might affect their child’s access to services and programs.


To Read the entire blog post from The Friendship Circle follow the link here.

If you have any further questions, please call us at 801-272-1068.

Monday, November 26, 2012

NEW! Online screening tool for Autism.

Check out the new M-CHAT.org!  The online Modified Checklist for Autism in Toddlers.


M-CHAT is a tool that identifies children who may need a more thorough developmental evaluation. It has 23 yes/ no questions that are designed to access risk for autism and can be completed within minutes.
It is important to note that M-CHAT is NOT a diagnosis but a positive result means that you should contact your child's physician so that your child can more more fully examined.


The online checklist:

  • An AAP recommended developmental screening tool for children between 16 and 48 months of age
  • Access to M-CHAT.org available at no charge
  • M-CHAT takes about 15 minutes to complete
  • Results can be printed and discussed with pediatricians during the the well-child care visits
  • M-CHAT can be used anonymously, or securely saved for later review


Questions?  Call our office at 801-272-1068.

Thursday, November 15, 2012

Losing control only to gain more...

Today was our first day with a CNA to help with Camryn.  I have had nurses come and go with other things like PICC lines and RSV shots but not had anyone into help with Camryn's daily cares.  I have always thought that this was MY job and I really didn't need anyone to help.  However, the time has come!  Camryn is getting bigger and it is getting harder to be able to do it all myself, especially when my husband is not home.  I thought when my kids were getting older it would get easier, but not so.  I kept having experiences that were teaching me that in home help just may be the way to go.  Was it easy at first... NO!  Within the first couple days I knew the first CNA was not going to work out.  We now have new CNA and so far things are going good.  Like I said, today was her first day with out me right by her side, and she did pretty well!

So how do you know if you would qualify for Home Care help?
Typically personal care services (provided by a CNA) are paid for with Medicaid,  however some long-term care insurances and a few private insurances do have benefits that cover personal care services.  You also will need to get a prescription from your child's doctor for a functional care assessment.  The agencies you talk to usually will take care of that all you need to do is provide the doctor's contact information.

How do I choose an agency?
Start with your local agencies and go from there.  Sometimes word of mouth is a good way to go also.  Utah Family Voices cannot recommend any certain agency but sometimes we can direct you to a network of families that you can ask.  Once you find a couple recommended agencies, call and you ask those questions that are important to your particular situation; ie, are the times you need a CNA fall with in their hours, what are the aides credentials, etc.  Also questions for the agency themselves; are your CNA's licensed and insured, is your agency licensed by the state, how are your employees screened, etc.  These are just a few questions to get started, you may have others as well.

Ok, I have someone set to start soon, now what!?
This is where you can learn from my mistakes.  I would recommend you have help start on a day when you don't really need it so you will have the time to train them.  I had the second CNA train on days when I wasn't working so she could just watch the way I wanted things done and ask questions without me worrying about time constraints.

DO NOT be afraid to tell the agency your feelings!  This is the greatest thing about hiring an agency, they do all the hiring and firing for you!!  For me, I really wanted someone that would blend well with my personality and do things the way my daughter was use to them being done.  After all, she is still my little girl and if anything this will help me be a better mom to not only her but to my other kids as well.  Stay tuned!

If you have additional questions, please don't hesitate to call our office and talk to us!

-Christine

Phone - 801-272-1068
Toll free in Utah - 1-800-468-1160
Spanish line - 801-272-1067


Friday, November 9, 2012

SSI resources




My name is Jodi Hansen.  I am from Eagle Mountain with my incredible husband of 25 years and 2 incredible boys.  Brendon is 15 and Jacob is 12.  I started my venture in the world of special needs when Jacob was born.  He was in NICU for 2 months.  While there he contracted spinal meningitis.  Later we learned that this caused him to have Cerebral Palsy.  We also learned that he has Cystic Fibrosis. 
I was lucky enough to find friends that helped me in this endeavor.  We learned about all the different systems.  As he grew and went to school I decided I would like to work with families that also had children with special needs.  I was extremely lucky to get the job at Utah Family Voices as a parent consultant.  I love working there and there is nothing more exhilarating than knowing I have helped someone navigate the system. 

We will be adding resources to this blog.  We hope you will find it useful and that you will share it with others.
The first resource I want to share what SSI and how to apply
What is Social Security Income?  (SSI)
SSI makes monthly payments to people who have low income and few resources and are:
  • Age 65 or older;
  • Blind; or
  • Disabled.
How do I qualify?
Whether you can get SSI depends on your income and resources (the things you own).  The amount of income you can receive each month and still get SSI depends partly on where you live. You can call SSI to find out the income limits in your state.
 If you are married, then also include part of your spouse’s income and resources when deciding whether you qualify for SSI. If you are younger than age 18, we include part of your parents’ income and resources. And, if you are a sponsored noncitizen, we may include your sponsor’s income and resources.
What resources count in deciding whether I qualify for SSI?
Real Estate, (does not count home you live in and land it is on), bank accounts, cash, (cannot exceed $2000, $3000 if married) stocks and bonds.
To get SSI, you must live in the U.S. or the Northern Mariana Islands and be a U.S. citizen or national. In some cases, noncitizen residents can qualify for SSI. For more information, ask for Supplemental Security Income (SSI) For Noncitizens (Publication No. 05-11051).
How do I apply for SSI?
If you are applying for SSI, you can complete a large part of your ­application by visiting our website at www.ssa.gov on the right hand side it says SSI, click on that and you can start the application.  You also can call us toll-free at 1-800-772-1213 to ask for an appointment with a Social Security representative.
You should bring certain items when you apply. Even if you do not have all of the things listed below, apply anyway. The people in the Social Security office can help you get whatever is needed. Please bring:
  • Your Social Security card or a record of your Social Security number;
  • Your birth certificate or other proof of your age;
  • Information about the home where you live, such as your mortgage or your lease and landlord’s name;
  • Payroll slips, bank books, insurance policies, burial fund records and other information about your income and the things you own;
  • The names, addresses and telephone numbers of doctors, hospitals and clinics that you have been to, if you are applying for SSI because you are disabled or blind;
  • Proof of U.S. citizenship or eligible noncitizen status.
You also should bring your checkbook or other papers that show your bank, credit union or savings and loan account number so we can have your benefits deposited directly into your account. Direct deposit protects benefits from loss, theft and mail delay. The money is always on time and ready to use without making a trip to the bank.
If you disagree with a decision made on your claim, you can appeal it. You can do that with or without an attorney of your choice.  You can find out more about how to appeal at www.socialsecurity.gov   Many people do not qualify the first time so don’t be discouraged and appeal it.
What ideas do parents have that have received SSI benefits?
It is great to have the extra income to help with my child’s needs.  Be sure to keep records of all money coming into the household. 
If they have overestimated your income and have paid too much SSI, you will need to pay Social Security back—even if the money has been spent.  Send in paystubs every month.  Sometimes SSI will say they gave you a overpayment.  If you have already sent in paystubs then you can appeal the decision.  Problems can arise when parents forget to send in paycheck stubs, assuming,” If Social Security sent the money they must know what they are doing; it belongs to my child.”  BE CAREFUL! NEVER ASSUME! Many intelligent parents have found themselves owing thousands back to Social Security.  I can be a mess if you are not careful!
Write down the name and phone number (including extension!!!) of the Social Security employee assigned to your case so you can reach them with questions.  Establishing a good relationship with this employee can help nip potential problems in the bud.
Keep a detailed log (include date!) of each conversation you have with a Social Security employee, local or on the toll-free number.
Keep very accurate records of your income, and always remember to mail the original paycheck stubs into Social Security at the end of each month.  They will provide postage-paid envelopes for this purpose and will return your documents.  You may want to keep copies of your records before sending them to the SSI office.
Keep accurate records of how the SSI is spent.
You can always appeal a decision made by Social Security.  But we recommend doing all you can to prevent problems in the first place!
It is  important to note that the Utah Social Security Office has new hours M-F 9-3  Starting January 2, 2013 Wednesdays it will close at noon.
 
 

Monday, October 22, 2012

Hello,

My name is Tina Persels, I am a Parent Consultant at Utah Family Voices Family to Family Health Information Center, and this is my first post to this blog.

I have been with Utah Family Voices for almost 7 years. Working with this organization has been a blessing in my life. I have had the opportunity to meet and assist so many wonderful families and professionals.

Helping families to navigate the complicated world of special health care needs is what we do at UFV, and I love it when I can help a family find a resource or answer to what challenge they may be facing. I know what it feels like to be the parent of a child with special health care needs, and I know what it feels like to not know where to turn with some of the challenging issues we face with our children. That is why it is our goal at UFV to assist families and also to let the know they are not alone.

My husband and I are the parents of 2 great kids. Both are 12 years old and full of wonder. Adam, my son was born early, at 28 weeks. Following his birth, he went through a lengthy stay in the ICU (367 days) and multiple surgeries. When he was finally discharged from the hospital, 2 days after his first birthday, he came home with a multitude of special health care needs. At that time he was diagnosed as medically fragile, with cerebral palsy, chronic lung disease, hydrocephalus, and developmental delay. Four years later we would also learn that Adam has Autism as well. Our daughter does not have disabilities, and she is the best sister ever. She adores her brother, and he adores her.

In the future months I will be blogging about life with a child who has special health care needs, and also posting great resources I might come across. Please feel free to comment and give us feedback on our blog!









Monday, October 1, 2012

Hello!  Let me take this opportunity to introduce myself.  My name is Christine Evans, I am a parent consultant for Utah Family Voices and I have worked here for 4 years.  I have been married for 16 years to a wonderful husband, father and pretty darn good handy man.  We have 4 children; Cassidy,14, Caitlyn, Camryn, 12, and Luke, who is 8 years old.  Our journey starts with the birth of my sweet twin girls, Caitlyn and Camryn in December of 1999.  They were born at 23 week gestation and both were pretty big for how early they were, 1lb 8oz and 1 lb 15oz, respectively.  Unfortunately our twin A, Caitlyn, passed away when they were 2 weeks old due to the complications of her premature birth.  Camryn, however, was a little fighter in the NICU and, after a long stay of 5.5 months, she came home and so we began.  Camryn was a pretty sick little baby, she was in and out of the hospital for the first 2 years of her life, spending her very first birthday in the hospital. She now is a sassy little 12 year old girl who just started Junior High!  She does live with some pretty complicated disabilities; Cerebral Palsy, Epilepsy, and Hydrocephalus, along with a whole host of medical equipment and supplies; Wheelchair, G-tube supplies, Stander, walker, bath chair, communication system etc, etc.  All that being said, she is considered total care and as hard as it may seem, she has been the biggest blessing to our family!  I love working at Utah Family Voices!  This opportunity to be able to work with families who are going through similar struggles related to having a child diagnosed with a disability or special health care need, has been so wonderful.  My favorite part of the job is talking one on one with the parents and helping them navigate this complicated system.  I also have loved teaching our newest project the ABC's of Autism!   I have included some pictures of my family.  The most recent  picture is our family and another picture of Camryn and our family beagle.  Then I also included a picture of my oldest and youngest hugging because we all know how "loving" siblings can be toward one another :)  All kidding aside siblings is one of my passion when talking to families because I realize all to often how hard it is for those siblings of our special health care kiddos.  Thank you for visiting, we hope you are having a wonderful day! - Christine

Friday, September 28, 2012

Night of Miracles
Please check out this awesome event going on tomorrow at Utah's Olympic Oval in Kearns, UT!  This is a benefit for a super cute little guy named Nathan Glad.

Tuesday, September 25, 2012

Alone we can do so little, together we can do so much - Helen Keller


Hello and welcome to our very first post on our brand new blog!  
We want to introduce ourselves and let you know about what you can expect from this blog and why you will want to check in or follow us.  At Utah Family Voices Family to Family Health Information Center we try and keep up with the latest information and also partner up with many agencies from around Utah on what resources are available. By contacting our office (801-272-1051), connecting to our Facebook page (Utah Family Voices) and reading our blog, you can find information, resources and what is happening around Utah for families of children with special health care needs. We are also parents of children with special health care needs so you are sure to have an understanding person on the other end of the line. We have so much to offer with our own experiences and felt a blog was a great way to get that information out there!  In the days to come we will take a few minutes and introduce our families and begin this great journey that we hope will help you make the most of what Utah offers our great kids!!