A Start

I’m happy to tell you I started a day program last Monday. I get picked up at 9:30 am and I’m home at 2:30. It feels good to get out of the house and to see new faces. I even saw Scottie, an old school buddy from years ago. He graduated a few years before me but we recognized each other immediately and I overheard him tell the person next to him how cute I was.

As I said, it’s great to be meeting new people but, I’m dying to get out of my wheelchair, while I am at the program. There is now almost no physical therapy for me. 2 months ago I left the Center for Discovery and almost daily attention to keep me in shape. Here it seems the only time I get out my chair is when I need to go to the bathroom and that’s turned into an ordeal where I’m hooked up to a lift. I guess I’ll get used to it.

My mom makes sure I get exercise when I arrive home. This past weekend we walked up and down the block which is hard for me because it’s a hill and walking downhill is very challenging for me. I want to show everyone at my day program how I get around with a gait trainer. I need more physical therapy, which will stretch me and work on my balance and transitional skills. I don’t want to lose all I’ve gained over the years because of lack of use.

My mom and dad have not given up their fight with New Jersey. Our government officials have been quite unresponsive to us. But, there are some wonderful people and organizations that we are slowly becoming aware of, that may be able to help me find a community based home that will provide me with peer socialization and a purposeful life outside of an institution. Strangely, New Jersey has not helped us connect with these organizations – the only option they offered me was institutions that would hide me away like I was living in the 1950’s.

At least now, I have a day program through DDD, and I am going to receive 35 hours a week of home health care assistance so my mom will be able to take Zack to his after-school activities, doctor appointments and get some help feeding and bathing me.

This fight is far from over, but my mom says my struggle is really a battle for all the disabled people with medical frailties living in New Jersey. She says I’m a pioneer who must fight for the right to live as an adult in my own community. I say New Jersey must stop spending our tax dollars on outdated institutions that warehouse people like me.

Disabled Adults Can't Wait Forever

Here's another story about New Jersey's long waiting list for placements for adults with disabilities like me. The post is almost a year old but the story remains the same: Most young adults in New Jersey are forced to choose between living at home indefinitely, despite the burden it places on their families and the enriching life it denies them, or to go into a hospital-like institution that falls very short of meeting the state's goal (and the court's demand) that we receive the least restrictive care possible.

New Jersey's official goal for disabled clients, established years ago, is that they be placed in the least restrictive setting compatible with their disabilities. For most, that would be a supervised group home, housing six to eight people. For a more independent person, it could be a supervised apartment.

In other words, we want the disabled to live as full and free a life as they can without endangering them by forcing them to do things they cannot, which can mean anything from caring for their hygienic needs to fixing their meals or taking the bus to a job.

...But that scenario became a reality for only 28 adults last year.

For the rest, click here.

Rabbit Hole

There really are a lot of you out there writing to our governor, congressmen, and assemblymen about my situation. Some of you have even gotten responses which you have forwarded to us. You've been met with form letters or answers that are frustrating because they don't understand the system and how I'm falling through the cracks. My sister's friend, Mary, got a response to one of her letters from assemblywoman Vandervalk, stating that the Eastern Christian Children's Retreat which was originally offered to me and which I visited, was wonderful and that I'd get excellent care there. It's true, it would have been a nice place, if I didn't have a feeding tube and seizures, because then I could live in their charming cottages that are more home-like. Instead, I was offered a hospital-like institution with 4 people to a bedroom facing a nurses station that would have lights filtering into the room all night.

That being said, I want you to keep speaking for me. I need you to be my voice and I'm gratetful to you for standing up for me. Right now many of your pleas for help seem to be falling into the Rabbit Hole. We get kind of excited one day that progress is being made. Then the next, there's only silence. This is a strange and difficult process. They may not have quite gotten the message yet, but their ears and their minds are starting to open. So don't stop.

Anyway, while I wait for the Rabbit Hole to close up, and our words to sink in, I sit and sit some more. It is like the Cat in the Hat on a cold wet day where there is no place to go, and nothing to do. "So all we could do was to Sit! Sit! Sit! SIt! And we did not like it. Not one little bit.".