Chris Care

Chriscam and much of Chriscare are not cheap.

On Sept 7, 2015 Pat, Chris' mother and guardian, asked me to help her with Chris and his care. Pat's health had taken a turn for the worse and she worried about what would happen to him if she was unable to continue as his guardian.

I began looking into his situation and believed that his living situation was the best which could be done but believed he could use newly developed tools in order to communicate. After researching available software and hardware, I decided that the potential hardware options of a Windows based system and the potential applications available with the Grid 3 communications software from Sensory Software would be the best choices for him.

After looking at available funding it became apparent that the best system for him could not be purchased through any programs he was on without serious delays. While there were possible methods of obtaining him a communications system, the process could take 6 months to a year and Chris would end up with something with serious limitations.

Pat and Bess, Chris' grandmother, had recently obtained some extra funds and agreed to apply some funds to Chris communications system. i purchased his first computer, the Asus All in One Tablet which is currently in use by Chris to monitor the livestream. The tablet is also Chris' backup in the case where his Windows Surface Tablet needs repairs. I also purchased the Turtle Shell speaker Chris uses as an amplifier and a Kinsington Trackball which I believed Chris might be able to use instead of the touchscreen. When I took the computer to Chris (he lived 200 miles from his mother and I), I also purchased the mounting system needed to mount his tablet to his wheelchair and his chair table. i made the chair table in Chris' deceased grandfather's shop.

Pat, Bess, and Aunt Liz supplied the funds needed for those items in the hope that there would be a way to get the funds reimbursed once we proved that Chris could use them. It ended up that none of Chris' funding sources would pay for the equipment Chris needed to prove that he would benefit from those items. That was a "Catch 22" where no one would believe that Chris could use and benefit from a computer system until he had such a system which would not be paid for since he already owned the system.

On January 1st, 2016 we were informed that the computer Chris had was not working and we decided he needed a backup computer to ensure he had a method of communications. We purchased the Windows Surface tablet Chris uses currently.

Shortly after providing Chris with the communications system we were able to get Chris a speech therapist who helped us develop the initial set of software grids which Chris used while learning. The therapist also produced a report which we hoped could be used to pay the $700 needed to obtain the full version of the Grid 3 software. After 20 hours a therapy and 2 months of planning and communicating our with that the software be purchased on March 1st 2016. That was the day the software became available for U.S. sale and two days before the trial period would end. His caregiver in Arlington actually used Chris' personal funds and never went through the process required in order to get the software purchased using one of Chris' funding sources.

During February we were informed that Chris was having behavioral problems and his caregivers requested we look into transferring him. Pat and i looked at transferring Chris to East Texas where he would be closer to us but were unable to find a suitable home. Someone suggested that we could allow him to live with us and were exploring that option when, on march 14th, 2016, we were asked to move Chris immediately. Chris mother and his Program Provider decided to make an emergency transfer and move Chris in with his Aunt Liz and I.

We purchased Chris' bathroom chair and a shower hose needed to for bathing him and I went to get him and his belongings the next day. Thus began chriscare!.

It quickly became apparent that caring for Chris was a full time job for at least four people but by that time i had discovered the Consumer's First Choice Consumer Directed Option program available. After researching what was offered we hired our first employee at 36 hours per week. That gave us 6 hours each day of relief six days a week. initially. We actually put her on the payroll 2 weeks before the funding source became available.

The next week we hired a second employee (Terrae) but did not have any more available hours to pay for more time but the second employee relieved the initial employee from having to work a split shift six days a week. For the first two weeks, Ms Pat and Aunt Liz split the cost of paying the employees. it was our hope that once everything was in place the first two weeks of employees costs would be paid for because we had done an emergency transfer. That failed to materialize since Chris' Service Coordinator declared that an emergency transfer required a receiving organization to be established. Who in the world decided to establish rules that determined that emergency transfer could not occur until a Program Provider was selected and all of the meetings and paperwork was completed? Did they expect us to place Chris into an institution instead of providing him a safe, comfortable, and caring environment?

Since then most of the costs associated with Chris Care have been for Chris' entertainment, transportation, and his personal needs. Currently Chris gets under $300 from Social Security and SSI and those funds supplement costs for those items along with using the Room and Board funds available to Aunt Liz. There is also about $50 a month paying for a no interest loan Chris received when he selected and purchased his dresser, bed side table, and chest of drawers. The furnishings Aunt Liz had were not enough for his belongings.

While he currently receives SSI and Social security, that was not true during April. There was also supposed to be funds in his accounts when he moved in with us as well as deposits for April which have not been accounted for.

Two weeks ago in an effort to minimize his behavioral issues we started the Chriscam which had a dual purpose of allowing his mother to observe him in real time and to allow the world to see how far Chris has come while tracking his progress in the future. The link: http://chriscam.net/

While I have minimized the cost of the Chriscam feed by using free services such as Livestream's free month and Youtube the costs of continuing them will come up shortly. There is also the cost of the camera itself. While I may still send back the camera since it is unable to satisfactorily provide two way communications between him and his mother, i can't do that until another camera is obtained which will perform as needed.

We don't expect the PayPal button to provide all the funds needed for Chris' care but it is our hope that we can get enough funds to continue the Chriscam live for all to see as well as recouping the costs already expended which we were unable to recover due to the inherent failing in the system which should have provided many of the items and services which were paid for by Ms. Pat, Granny (Bess), and Aunt Liz.