From: Brande Juber
To: David Lifferth,
Subject: Katie Beckett Waiver
Date: Wed Jan 22 00:03:28 MST 2014
Representative Lifferth, 

I wanted to personally invite you to a reception sponsored by the Legislative Coalition for People With Disabilities which will be held Thursday, February 6th, 2014, from 4:00 - 5:45 p.m. in the Capitol Rotunda.

I am not sure if you are familiar with the Katie Beckett Waiver, but the bill we are trying to get passed is just for Medicaid so that only the child's income would be considered. It will help those lingering on the waiting list for DSPD. Currently only 2% of people receiving services through DSPD are children. My son has been on the DSPD waiting list for 6 years now and currently we have no hope of getting off the wait list anytime soon.   

We have been on Social Security now for 5 years, which we automatically qualify for Medicaid Disability.  My son was born with a rare brain condition called hemimegalencephaly. His left brain is large and abnormal and caused hundreds of seizures a day during his first 3 months of life.  Because of the inability to control the seizures, he underwent a radical brain surgery called a hemispherectomy, where they remove or disconnect the bad part of the brain.  That first surgery happened at 3-1/2 months old.  This last summer he underwent a total anatomical hemispherectomy at Cleveland Clinic to remove the remaining left half of his brain because he continues to have seizures.  

Having a special needs child is very daunting and very overwhelming sometimes.  Having additional insurance has helped tremendously.  In the next few months we will no longer have Medicaid because we make too much money for Social Security and Medicaid.  My husband just got a raise and we are barely over the limit.  I'm not sure how we are going to be able to cover my son's needs.  We do have insurance through my husband's employer, but with the high deductible and the many therapies, meds and supplies he needs, it's going to be very difficult to cover.  My husband and I also feel like we don't need Social Security, we don't care about receiving money.  All we care about is the Medicaid part to help with the costs associated with having a special needs child.  Two years ago I actually quit my job because my husband got a new job and with my wages, we would be over the limit to receive Medicaid.  It was a very difficult decision and I didn't want to quit because we want to be responsible citizens and not take advantage.  But when the system only works if you take advantage, we didn't have another choice.  So I quit my job so we were able to keep Medicaid. I also know several families who have been through this exact situation.  A recent friend of mine had to purchase another vehicle because their 2nd car was about to be paid off and to keep Medicaid you have to have a loan on at least 1 car.  I think this is absolutely absurd as a family has to stay in debt to be able to receive help.

I am sure one of the concerns the state has about Katie Beckett is the cost to the state. I personally feel like the state is losing tax dollars because I am not able to work (if I want to keep Medicaid) because of the income limit set by Medicaid and Social Security.  
A few things that I have read up on suggest this:
*The cost of expanding coverage to this group is usually low. Some states pay less than 25% of the total health-related costs of children on the program. Private insurance, family‚Äôs premiums, schools, and counties cover the rest. 
*Studies in other states have shown that the overall cost to the state is low, and that the majority of children who get Medicaid through these programs also have private insurance. 
*Allowing children to have services at home instead of in an institution saves the state money. For example, in Kansas, the average annual per-child cost receiving institutional level services at home is $12,900, compared with institutional costs of $25,600. 

Please consider signing for the Katie Beckett waiver.  If we were to have access to this waiver, there would be no question in my mind about taking my son off the DSPD wait list and actually have heard many many comments like this.  More people would take themselves off the wait list.  There are 22 states that currently have this waiver in place.  We have actually considered moving out of state because we know those with disabilities are better taken care of.  We love Utah.  Our family is here.  We need support from our family to get through these difficult times.  Please don't take that away from us.  

We appreciate all that you do for our district and our state.  

We will be there at the reception, with my son Tyson and look forward to meeting you there.

Brande Juber