February 18, 2011, Independent Living Specialist Henriette Gregorio received a call for help from Chet Bailey:
“My wife, Debi, has been ill from System Scleroderma for about 16 years. Last July I had to quit my job because of a heart condition and our plan was for me to do consulting as we pursued our online, home-based business. Debi’s illness was advancing much quicker than we expected and with all the care giving, I wasn’t able to do consulting work. By the end of August we were completely out of money and falling behind on our bills. Social Services were trying to enroll us in Consumer Directed Attendant Support Services (CDASS) so that I could be paid as her caregiver, but they missed a step in the process and we still had no benefits by November.
I had been negotiating with my creditors on the assumption we would get state aid soon, and when that fell through, all hell broke lose. We were evicted from our store, and our motor home (which we live in) and our car were put out for repossession. By the end of December Debi was having major seizures throughout the nights, and barely able to function throughout the day. And without medical insurance we were only able to get very basic medical treatment (mainly talking to her doctors over the phone and adjusting meds based on her symptoms).
Near the end of January, Debi’s Medicaid came through and we were back on track to start CDASS around the middle of March. I can’t leave her for any length of time because of the uncontrolled seizures. My time is spent dealing with doctors, pharmacies, medical suppliers and home-care agencies; negotiating with creditors; as well as trying to keep our business from going under all while attending to daily house-hold needs.
Debi, Chet and Henriette met for intake at the Cripple Creek satellite office of The Independence Center on the same day that Chet called. Henriette takes up their story:
We spent three hours recounting history, details, needs, and simultaneously brainstorming for resolutions. Having already demonstrated a long history of persistent self-advocacy, Chet and Debi identified with me both onhealthy.net immediate and long term goals, among them:
- Immediate shelter: There were 72 hours ticking before their current home, a recreational vehicle, was to be repossessed. Chet took tenacious notes about the three affordable housing areas in Teller County and the contact information I gave him.
- Food: Supplies were exhausted and Debi had special dietary needs including gluten free foods which were difficult to get with diminished funds. Little Chapel of the Hills pantry directors, Ken and Judi Hesselberg, were contacted and arranged an emergency food box for the Baileys to collect that afternoon.
- Income: I referred them to the Division of Vocational Rehabilitation (DVR) to begin the application for business capital and vocational help.
- Dental intervention: Neither Chet nor Debi had received oral care in many years and knew there were issues which they did not have the resources to cover. I referred them to a dental program that provides a free evaluation, screening and dental cleaning for needy, qualified residents.
- Accessibility: Debi was making do with a basic, manual wheelchair. I contacted Wheelchair Collections for Push International to request a more appropriate free wheelchair.
- Vision care: Debi’s medical condition affected her eyesight and so I referred her to Colorado Eye Associates, which has a program for low-income individuals.
Within 48 hours, Chet was close to acquiring the needed housing, but the landlord required confirmation that CDASS income would soon be forthcoming. As it was Friday afternoon, I advised him not to stop calling up the chain of command until he got a live person with a “yes” who would not only write the letter, but fax it the same day to the property owner. Once their shelter was secured, the Baileys diligently followed up on every other referral I had suggested.
Chet is currently writing an instructional guidebook for those who are transitioning from full-time employment to fulltime care giving, just as he did for his wife.
Our thanks to Henriette Gregorio and the Independence Center of Colorado Springs for this story. Reprinted from Independent Living: A Look at the Four Core Services Provided by Independent Living Centers, a publication of the Colorado State Independent Living Council