CSS: Best Kept Secret in New York State

The following essay was shared by NYSELFD member and blogger Wendy Kaplan during the OPWDD 1115 People First public comment period in May 2011.

I have a daughter who has autism, who when left alone in her bedroom, may start eating her blanket. She works wonders with any electrical system, by which I mean she has severed live wires with tools that she “borrowed” from her father’s workbench.  Her latest behavior to keep us on our toes is emptying drawers of clean clothes, wetting them, mixing them with dirty clothes and stuffing them in the already full hamper. My daughter also is a student who takes classes at Hofstra University, works on an organic farm whose creation she inspired, and volunteers to walk the dog of a neighbor in need, rain or shine.

How does she accomplish this? My daughter has CSS [Consolidated Support Services]. She is no more of a riddle wrapped in a conundrum than any of the other adults that you will hear about today- they are all individuals with a capital “I”. And they, like each one of us, are changing, every day of their lives. How lucky my daughter is that she has a program that changes with her- that allows for her changing interests and capabilities. She does not have to face a life where she must like the activity the group likes, when and where the group likes it, and for how long the group is scheduled to do it, any more than you or I would. She has the freedom to direct her day, create a structure for herself, and CSS gives her the people to do it with her.

There are those who would say that this flexibility represents too much of a challenge for families, and for those families who see this individualized program as too much of a challenge, they should be able to avail themselves of other options.  But for those who see it as an opportunity to see their adult children with disability lead happy, fulfilled lives of their own making, it should be made readily accessible by the OPWDD.

When we look at why more people have not requested CSS, we should look at the number of people in the state transitioning from district services into adult services who do not know of its existence. How many heads of pupil personnel know about it? How many guidance counselors, special education teachers, transition coordinators?

In my experience, there are very few people in the field who know about CSS, and if they do know about it, they have been told that it is “too complicated” or that it applies to only a very few adults.  We should not be asking why more people aren’t taking advantage of this program.  We should instead be asking what we must do to remedy this situation- where a program that is effective in concentrating resources at the level of direct support for the person with disabilities, infinitely capable of individualization, uniquely integrative with community resources, is effectively the best kept secret in the state of New York.

Perhaps there is nothing wrong with the program, just something wrong with the way in which it is delivered, or, in this case, not delivered to people.  We must look at places like Long Island and ask ourselves: what is happening here that accounts for more people with CSS plans than in other counties with similar populations?  We should be asking people with CSS about their level of satisfaction with the program and compare it to the level of satisfaction of people who are using traditional agency day hab services. We need to make sure that our decisions in this area, in a time when money is so tight, are based on reliable population research, rather than the best guess of a well meaning committee. We owe this much to the people that we serve.