Thursday, December 16, 2010

A Sister's Love and Concern

My name is Tiffany Resendiz and I am a care provider for my little Sister Victoria Trueblood. My sister Victoria is 18 years old and was diagnosed with Rett Syndrome when she was about 5 years old. Her Syndrome keeps her from walking and talking, the things you and I might take for granted. She is mentally about the age of a 6 year old and acts like a little baby would.

I have been caring for my sister for about 4 years now and I couldn't picture myself doing anything else. My sister is such a joy to send time with. My sister is currently on a number of medications. She takes 2 medications for her seizures, 1 for her back pain due to a Harrington rod, 1 for her indigestion problems and the list continues on and on. As of currently, she has 420 hours for care providing for her, without which I don't know what my mom would do.

Taking care of Victoria is a 24 hour job, she even needs to be listened to through the course of the night due to many Rett Syndrome girls passing away in their sleep. The job which entails taking care of Victoria is not a easy job at all but I wouldn't see myself doing anything else. The thought of not having the hours available for taking care of Victoria is a idea that my mind would never want to grasp. I am not in one bit afraid of losing the hours for self pity but the thought of Victoria not having hours to receive proper care for bath time and nightly activities scares me to death.

On the topic of health care such as dentist appointments, eye doctor appointments and prescriptions being cut could be severe and even deadly to a person with special needs like my sister. Without her medications my sister couldn't survive even a day and the thought of living without my sister is the worst thing imaginable. Without eye glasses adults and even children have no way of seeing and for some disabled people seeing is everything to them when they cant walk or talk. Seeing is all they have. Not being able to go the dentist is just as horrible because these are the only teeth they are going to have and if this privilege is taken away how will their teeth be properly cared for?? Could you imagine haveing no money or means to pay for the basic things like a simple teeth cleaning or fluoride treatment.

I'm sure many non-disabled people couldn't imagine what this would be like because they have proper medical care, but for me with hands on experience it could be vital for the survival of someone like my little sister. I love my sister very much and the thought of her turning 18 didn't scare me so much until I saw the cuts that were being made and the decisions that were underway.

I am asking you to think about the many disabled adults who are affected and ask yourself, If I was disabled, would I want for myself what I am cutting from so many other disabled people?? Put yourself In my shoes for a day, taking care of a helpless person that has no means but to be in the graces of others and I bet you will find your answer changes. Please, for the sake of a little girl that is disabled and many others who cant speak for themselves, reconsider your decision. If my little sister cant speak then I alone will be her voice.

Tiffany Resendiz

Thursday, December 9, 2010

Not One Step Back!

I want to talk about the danger to community services for those with a developmental disability during this Legislative session. The current political landscape does not look promising for community services as the Legislature struggles to close a projected shortfall for the coming two years.

During the legislative session three budget proposals are created, the Governor's, the Senate and the House of Representatives. Although these proposals will differ slightly from one another, we can be sure that there will be significant cuts offered in the discretionary spending areas of the budget. Services for developmental disabilities are in this area of the budget. I have seen the proposal for the Governors supplemental budget and though some of them may change for the better, we cannot count on it.

Currently the Governor proposes the elimination of all medication coverage for persons on Medicaid, with the exception of those provided within a medical facility. If this is allowed to stand, persons with developmental disabilites who do not have the resources to pay for the everyday medication that allows them to function and reside in the community, would no longer have medication available to them.

All dental care, with the exception of emergency pain control, would be eliminated. This could mean that unless a tooth is pulled, there is essentially no treatment and if the patient needs pain medication after leaving the dental office it will not be available, because it would be an outpatient medication.

Eyeglasses would be eliminated.

These are just three of the programs currently scheduled for elimination. Others are proposed for reductions in funding from 2% to 50% depending on the program.

Although this is not an accurate figure, if say you had 120 hours of family support service available to you, it could be reduced to 80 hours.

Providers of Residential Services would receive enough of a cut that their ability to hire and retain employees will be seriously impaired. Case managers working with the unserved will be eliminated. Job placement services for those leaving school will no longer exist.

For all of us, and the ones who need service, this may well be our Alamo.

Now is the time for all good persons to heed the call to arms to prevent the loss of services that those who came before us fought so hard to attain and to keep them from slipping into the abyss of the closet.

Now is the time to heed the call Stalin gave to his Commanders when the Germans were twenty miles from Moscow. The message was simple, "not one step back".

I am asking that each of you join me in the upcoming battle to preserve meaningful services in the community for those with a developmental disability and I ask you for one simple thing, ten minutes of your time to contact your representatives in Olympia on this issue. I further ask that you coordinate your effort through The Arc so that the message will remain in front of our Legislators throughout the session.

Some of you will be thinking that there will be enough others to carry the load or let the good intention of calling fade like a distant memory. At this point in the history of Community Services I cannot over stress the importance of your involvement.

For those of you who do not think you have the skill to articulate the message, I would say you only have to look at a stammering child asking you for something to realize that although the words are not perfect and the child is stammering, the message comes through loud and clear.

I ask this Chapter to take on the task of coordination and to ensure you have the information needed to make the call.

If you are a person with a developmental disability, a parent, a friend or perhaps a service provider, tell how these draconian cuts will affect you or the ones you care about.

Ten minutes of your time is not a great deal to request and that ten minutes you spend may well be the factor that saves a service or for that matter many services.
Even if it looks like we are not going to be totally successful, we might just be able to accomplish what those at the Alamo did and give those who follow a greater chance to prevail.

I want to thank each and every one of you for listening. I hope that each of you has a joyous holiday season and until we meet again may God forever hold you in the palm of his hand.

By Lew Isham

Lew Isham has been a member of The Arc of Kitsap County for over thirty years. He currently serves on the Board of Directors of The Arc of Washington State.