I was asked last week to testify in favor of House Bill 1226 in front of the State Senate Finance Committee; the bill was introduced to provide funds for respite to families caring for those that are unable to care for themselves. The bill passed this committee and is now headed for the Appropriations Committee, my testimony:
‘Good morning Mr. Chairman and members of the committee, my name is Kelly Krei, my wife, Michelle, and I are the parents of twin 17 year old boys both born with Down syndrome and both diagnosed with Autism Spectrum Disorder. We are married and have lived in Adams County for the last 28 years.
My sons, Hunter and Kyle, require 24/7 supervision. They are non-verbal, require assistance with hygiene, eating, general safety and daily activities. In short, the only time they don’t have a set of eyes or ears on them is when they’re asleep.
In 2006 I was told by my employer that I was placing a higher priority on my children than my job so I quit my job to stay home with my boys. My wife and I made the decision that my wife’s career, as a United Airline’s flight attendant, would remain primary because of health insurance benefits. In 2007 when our household income could not support us, my mother moved in with us to help financially, she is 72 and still works a full time job. In 2008, my wife took a 30% cut in pay and a 100% increase in the cost of employee benefits. I returned to work 6 years ago taking a job in the insurance industry because of the flexibility it provides me to meet my boys’ needs. I average about 30 hours per week. As you can see, our lives have been greatly affected.
The boys were born in 1995, we did not take a ‘vacation’ until we enrolled them in Adams Camp in 2000. This is a one week intensive therapy camp which had a per child cost of $2,000 per week – $4,000 for my boys. We now enroll the boys in an adventure camp with the same nonprofit at a cost of $750 per week per child. This is our only break, our only respite. When we send our boys to camp my wife and I stay in a townhome 10 minutes from the camp in case of emergency. We receive a total of 5 nights per year to ourselves, by ourselves, scratch that . . . in order to keep the cost of our lodging affordable we share the townhome with another couple . . . semi-by ourselves.
In terms of financial help, we gratefully receive $300 per month from North Metro Community Services, Adams County Community Centered Board, for respite and medical expenses not covered by health insurance; the out-of-pocket expense totals more than $8,400 annually.
As you can see, we struggle and unfortunately, have considered bankruptcy. There is no extra money for a night out or away from our boys. Our life is challenging and our future poses significant challenges. When our sons reach age 21 and are no longer eligible for high school, there is a wait list for available services. The current expected wait is 7 to 8 years.
It is my family’s hope that you pass HB 1226 to create a fund supporting respite. Even with three adults in the house at times, our family does not get a break from caregiving because of my boys’ great needs. ANY break from caregiving would be welcome and greatly appreciated. Like many other families, respite is the key to caring for Kyle and Hunter in our home.’
My immediate thought was decline to testify because I would be too nervous to speak in front of 7 or so State Senators but then I thought, what would Kyle and Hunter think . . . would they be proud of me for speaking or not, so I did the right thing and spoke.