Daniel
My name is Meri Krassner and I want to talk about needing a residence for my son Daniel–this smiley happy guy. I spoke about this last year and I’m back again because all that has changed is that I am another year older (and there is still no place for him to live if anything should happen to me or my husband).
I never describe Daniel as being developmentally delayed because it suggests that although there’s been some delay, he’s just going to arrive late. But Daniel isn’t getting there–late or otherwise. He’s on a different trajectory and it stops way short of independent living.
Daniel is a full-time responsibility. And he can be exhausting. I have several coping mechanisms: compartmentalization and denial. I am in denial about my age. I sometimes join in conversations with younger parents because in so many ways I have a very young child at home who just happens to be 23. He still needs to be given a bath, have his teeth brushed, his face washed, his clothes cleaned, his meals made, among a host of other things, including needing to be accompanied outside. It’s always jolting when another mother will say, “So, how old is your son,” and there I am saying, “Well…he’s 23 but, dot dot dot.”
In my little bubble I can hide from facts that are painful to experience–otherwise I wouldn’t be able to get up in the morning. But I can only maintain this illusion as long as real life doesn’t intrude. At work a messenger with a developmental disability came to deliver something. The impatience and dismissiveness of the receptionist with someone clearly disabled broke my heart. I had to put my head down on my desk I was crying so hard. The casual cruelty frightened me about the world we live in. That happened 20 years ago and it is like yesterday to me
A month ago they found a father and son dead in an apartment in the Bronx. The paper reported that it was an elderly man and his disabled son. The father had a heart attack in the apartment. His son, unable to take care of himself, starved to death. How horrifying that is.
I cannot make it through the day if I think about when I will no longer be here to take care of Daniel. This is the nightmare lurking on the edges of my life. Because if I am not here, when Daniel’s father is not here, what will become of him? I can’t imagine anyone being less able to fend for himself in the world than Daniel.
We were lucky: when Daniel was born we were able to get help because the parents who came before us worked with the state and voluntary agencies to create a network of supports. Without Early Intervention, respite, and residential habilitation, Daniel would be so much more dependent than he is now. He is a tribute to the system. And he is less expensive with all the gains he has made in vision, mobility, and verbal skills.
There is money for residential development but mostly for those needing low-cost options, not for those like Daniel who need 24-hour care. But it isn’t enough to just have a bed; it has to be the right bed in the right place. It has to match or it can be a disaster. Daniel couldn’t be in a house with people who are aggressive–he’s frightened by loud voices and has no idea how to cope with such behaviors. He has to be in a place with high staffing ratios, and the staff have to know the residents well. Daniel doesn’t report pain, so whoever takes care of him has to be paying close attention and know how to read him.
Lack of residential development for the most needy leaves families like ours praying for time. No money is no excuse for not planning. It looks to me like the government is just as guilty as I am of sticking its head in the sand and not acknowledging reality. In the real world parents are aging, their children are aging, and nothing is being done to keep up with this reality. What will happen if there is no place for Daniel when we are too old or too ill to take care of him? My son, and people like him cannot function on the street or in a homeless shelter. Something must be done or there will be a human catastrophe.
As it stands there is no reason not to fear the future. The prevailing attitudes toward Medicare and Medicaid have never been more negative. Those attitudes along with the disdain for the social safety net and human services are enough to strike fear in the heart of anyone—especially parents like me.
I know Daniel will be at home with us for a while–we are not in crisis. But the way to stay out of crisis is to plan. Our plan is to make sure that a system that works is not destroyed and that services aren’t subjected to death by a thousand cuts. We plan to fight against the lack of humanity we see around us—and to take our vitamins.