Day Progamming 2010 - New Jersey

March 11, 2010

Lauren had a seizure early this morning and it didn't make any difference in my schedule for the day. For twenty years, I could not make that statement. When Lauren has a seizure she usually sleeps until the afternoon and then is groggy until dinner time. So when Lauren used to have a seizure it would cancel any activities, meetings, appointments, or commitments I had planned for that day. When she was in school – that meant we were both home for the day. Now that Lauren is in self-direction, there is a DSP to provide care wherever she is – if she needs to stay home today – it’s not a problem.

Lauren has two to four seizures a month. When she was younger and before the medication, Keppra, was available, she had several different kinds of seizures and often more than one a day.  So, she could easily have over twenty seizures a month.  As like many other mothers in similar circumstance – meeting the significant needs of a child with developmental disabilities – I gave up any thought of a career or life of my own to be available to care for Lauren.

As another school year draws to a close, parents in New Jersey who have made the only decision they could – stay home to be there for their child – are facing a cruel form of discrimination. Due to budget woes, the State has changed its policy of providing day program services to almost all children leaving school at the age of twenty-one. Now these young adults must adhere to the criteria for an “emergency placement” in order to be eligible for day programming. One of the criteria states, “The individual requires supervision which is not available during the day and is at risk of imminent peril.” Yes, those individuals whose parent sacrificed their own life to care for their child will now be asked to do even more. Unless they find a job (in this economy, having been home for twenty years) they will, you guessed it, be “available” to provide supervision during the day.

I can’t even fathom how these parents must feel. I can’t wrap my mind around dealing with providing care for a child with significant needs for their every waking moment, seven days a week. And, how sad for this young adult, after years of having a semblance of their own life – even if it was only going to school – they will now have nothing. How can this scenario not result in premature placement of this individual in a residential placement which, by the way, is not available either. What’s the alternative? An institution. You will have parents physically and mentally burning out faster than necessary and a young adult, most likely, regressing or reacting to the isolation and lack of stimulation of a life without options. This will be the result of the State's inability to provide about thirty hours a week of day programming. As a parent what do you do when you are left with no acceptable choices? What do you do when your choices are providing 24/7 care or abdicating to an institution? What do you do? I am afraid to contemplate their answer.

2 comments:

  1. Hello - - - Its 11:52 pm and I have put my 21 year old beautiful daughter to bed. I find this time to relax and prepare for another day say a prayer giving thanks and asking for strength and wisdom to go another day. I am the sole provider 24/7 for my daughter who is severly disabled, but when she was born and they advised me what she would be like if she lived,I prayed to god and he answered my prayer. I asked that he let her feel the breeze of the ocean, and see the changing of the leaves. The only thing I can be sure of tomorrow is that she will stare into my eyes and give me a smile and I again will give thanks. I try to takle problems one at a time stay positive and understand that the person I am working with works for a pay check and thats okay a smile and patience works best for me. I keep a three ring binder sectioned off on everything to do with my daughter Maria ie: each Doctor, Equipment supplier, clothing etc. I hear stories about people (caregivers) who get burned out and someone will make a disparing comment which I always say unless you are their I will not judge. It is hard and if I let my self cry I don't know if I could stop. Wow, I think its time to go to bed but, i feel a need to check on her and give her another kiss and tell her Daddy loves her. Virgil

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  2. Dear Virgil,
    Thank you for taking the time, out of what must be a very full and tiring day, to share your thoughts here. Maria is a fortunate young woman to have such a devoted and loving father. I hope that you will be able to find the support you need to continue caring for her while meeting your own needs and dreams as well. Please know that you are not alone in your fears and struggles. Gail

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