Grant To Help Cerebral Palsy Disabled Couple Marry And Live In Own Home
by Kathi Brownell
(Gansevoort, NY, USA)
I am writing for Kim and Ken (Their names have been changed to protect their confidentiality).
Kim is going to be 50 this April and Ken is 46. They have a wish to someday get married and live in their own home or apartment.
They have been together for over 25 years. They love each other very much.
Ken always worries about his girl and wants to do whatever is needed to make her happy. We all know that if your "wife" is not happy... well you know the rest!
So, with both their birthdays being at the end of April, Ken would love to give his girl hope that someday her dreams would come true.
I was even going to contact Oprah to see if she might be able to help! However, it is very difficult for all of us to ask for help. So that is why using a grant seemed like the best way to attempt to get help.
Kim and Ken have been disabled with cerebral palsy since birth.
They are both living in an Individualized Residential Alternative in Clifton Park, New York. (I work with Ken and Kim as a Direct Support Professional.)
Ken and Kim have been through a lot in their life dealing with their disabilities. However, they are very positive and try to make the best of their circumstances.
They both attend a day program where they go to work every day. Ken gets up at 5:30 am and Kim gets up at 6 am. They leave the house at 8 am and return home around 4 pm.
Kim works non-stop using a head pointer that has a rubber stopper attached at the end of it that helps her stuff envelopes where she inserts letters into the envelope. If you watch her she is phenomenal!
Ken stuffs envelopes as well and tries to stay busy. They both work hard.
They would love to be able to come home to their own home, but they live with two other gentlemen.
This is hard for Kim because she is living with all guys and sometimes feels like she has no privacy or a complete place to call their own.
Kim has been living with Ken on their own side for three years and is now feeling stifled and alone and she is frustrated with following all the rules and regulations that are associated with living in an IRA.
Many nights she cries herself to sleep, and even breaks down crying uncontrollably. This is heartbreaking to see her like this.
As staff we have tried to bring this to the Administration's attention, all to no avail. The Administration says it is too expensive, but how do you put a price on a person's independence and dignity?
They just want to enjoy the same rights and privileges of those that do not suffer from a disability.
Kim and Ken feel trapped with nowhere to turn. This is my way of trying to help them, so your efforts at any help would be greatly appreciated!
Ken and Kim would need full-time care. They would need a van for transportation, and a new house.
I am offering my house but it would need many renovations, or I could donate the land and have something built.
The best alternative would be to have them stay with the agency they are with, but due to budget cuts, the agency is unable to build new housing or anything. They are in financial distress due to New York State cuts in aid to those with disabilities.
Ultimately, Kim and Ken would like to live somewhere south, where it is warmer, but this is probably too much to ask...
I am sure they would be grateful just to have their own home and possibly go on a vacation somewhere south. They have never been out of state on vacation since I have been there.
I have just started here thus far, because a dream such as this is very out of reach for those who are disabled.
If I had the money I would make their dreams come true, but I am just a direct support professional, who can barely keep my own family and myself afloat.
We all know how people in the human services field do not make much for a wage.
The agency that is involved, however, is very generous with benefits and other ways to value the direct support professionals!
Next we will be trying Oprah and Rick Warren.
We seek to have a home renovated to meet the needs of the disabled or a new one built but renovating would be cheapest.
If we were able to go out on our own, we would need a new van that holds two disabled plus the driver, usually an E350 is necessary.
We would need full time staff for 24-hour care… at least two staff, with one staff minimum.
We would need a hover lift, shower chairs and all necessary equipment.
They already have SSI, but would get less if they left and went out totally on their own without the agency that they use now.
Also, if they got married like they really want, then they would get less assistance because of marriage status.
I would like to start my own not-for-profit agency for Kim and Ken that have less rules and regulations such that the individualized residential alternatives have.
I love working with Kim and Ken and would also like to help others like them. Our agency would be more client-centered than a clinical centered agency.
As agencies get bigger, they lose the reason why they are there to begin with, which is they are there because of the individual clients.
All disabled should be able to have the same opportunities that the non-disabled have.
I know our society has made great strides in the area of the disabled, especially where they started with such cases as Willowbrook... but we do not want to lose the momentum.
We wish to have no obstacles and if there are obstacles, such as "it is too expensive" then we find ways to overcome the obstacles.
We fight and continue to fight, like we fight the cuts made to the most vulnerable population. To give up is not an option.