So we made the most of the day and went to Forest Park for a picnic. We don't have a picnic basket, so we doubled a back pack as a basket and packed it up. I think I will be getting a basket for an upcoming holiday because N really thinks we should have one as this picnic thing was not only free but very good for the soul. There is nothing like fresh air, cheese, fruit, music and the company of your family on a nice blanket at a park. What a good day. Plus I bought BBZ a few new toys including a walking toy. He is already pulling up on it all by himself! This is seriously going by way too fast!
And yesterday, look what N bought for me!
This is why we don't celebrate Valentine's Day. He does nice things for me all of the time. We don't need a holiday!
Work is going quite well also. I have taken on some new responsibilities of organizing 2 training programs we are hoping to start very soon. I am excited about this new endeavor and hope it gives me the change I am craving. Two people I have been working with since I started my job are in pretty failing health. Let me back up, have I ever described what I do for work? I don't think I have. I'll do that now.
I work for a Center for Independent Living (CIL). In order to call ourselves a CIL we have to offer 5 core services related to people with disabilities: Advocacy, Information and Referral, Independent Living Services (IL), Peer Support and Transition (from nursing homes or homelessness). I work in a sub-program under the IL program where a person with a disability becomes a small business owner, gets an EIN from the federal government and hires whoever they want to be their personal care attendant(s). This is important because the other option for a person with a disability (PWD) is to hire an agency to provide the personal care attendant, which could be any one of the many attendants that work for that agency and there is no guarantee they will show up or be a good worker, etc. And if they don't work for you, you can't really make them do what you want. This idea was thought of back in the 70s during the beginning of the independent living movement and emphasized consumer control. After all, if I were to become disabled (it is the only minority group you can join by the way) I would want to choose who I want to provide me with the intimate care that might be required.
So anyhoo, the IL specialists who work in this program have to do various tasks to ensure the work is actually being done and the participant is getting adequate care. There is also a tremendous amount of paperwork that goes along with owning your own business, so we pretty much take care of all of that stuff for them. This is a Medicaid funded program, so we bill Medicaid and do payroll for the attendants. Even though the attendant actually works for the PWD. It sounds complicated, but it is really an amazing program. It allows a son or daughter to quit their job and be paid to care for their mother, or for a mother to stay home and get paid to care for their child (over 18) with a disability. Or it allows the PWD to interview various interested applicants to find a good match. The control is in their hands, where it should be. The maximum amount of care that a person can receive is 5 1/2 hours a day, 7 days a week. This is enough for someone who has minimal care needs, but for someone who sustained a spinal cord injury (SCI), it would likely be enough for the morning to help get them up, dressed, and have some breakfast, but the day doesn't end there, so they have to find help from other sources, they might pay someone privately, or have family fill in for free. Sometimes neither of these are options and a person goes without the desperately needed support.
One young man I am working with was injured in a car accident a few years ago before he was 21. He sustained a traumatic brain injury (TBI) and a C4-C7 incomplete SCI (the C level is the highest and starts where your spine meets your brain stem (C1) and incomplete means that he maintained some movement below the break) which left him dependent on a ventilator to breathe. I have been working with him for 3 years or since about 2 months after his accident. I watched him get shipped off to a nursing facility out of state because there are no facilities in my state that provide long-term care to a person who depends on a ventilator to breathe. We have fought hard and he has been living in an accessible home with 8 hours a day of attendant care through a program called the Independent Living Waiver (ILW, this waives the cost cap of 5 1/2 hours a day for individuals who meet criteria). His mom pays privately for him to have 24-hour care. Their family budget cannot maintain this any longer. He is very sick and is in the hospital. His mom is unsure that he can return home because of his extensive care needs. I spent about 3 hours today working on the paperwork that shows the tasks people are approved for through the ILW which calculates the amount of time a person gets.
He calculated at 18 hours a day. It may be a long shot, but I am going for it. His only other option is nursing home placement out of state away from his friends, family and support system. Can you imagine being in a nursing home in your early 20s far away from anyone who care about you, basically waiting to die? It sounds like torture to me, and I have grown quite fond of this man, so I really hope this works. That's a long explanation, but I want to share what I do for a living since it is how I spend my precious time away from my baby. This is someone else's baby that I am helping, and I will do whatever I can to help their family. I faxed the request to the state, so please send your positive energy to him and hope that this is something that gets approved. This could literally change his life forever. I'll be sure to keep everyone posted.
Ok, it's pretty late and I have carried on enough. I know I said I have 2 people I am working with in failing health, so I send your thoughts his way as well, but I will save his story for another time. Goodnight!
