In Willowbrook's wake

Full story: Newsday 11
I didn't know why the sparkling green-tiled hallways of Building 6 at the Willowbrook State School for the Mentally Retarded always stunk of urine, but I did know that while Mom, Dad and I took out my younger ... Full Story
Larry

Salem, MA

#1 Jan 28, 2007
Very touching story. Highlights the need and value of devoting resources to working with individuals with emotional and intellectual challenges. The story captures the humanity of Fred and the warmth of the brothers relationship. How horrible that Willowbrook existed as it did.
Lara from sunny Malta

Paola, Malta

#2 Jan 29, 2007
Dear Allan, thank you for sending yet another wonderful piece of writing - all so clear and vividly expressed. Although sad, you have shown us that with some effort and perseverance your brother (even at this "later" stage of his life) can learn and improve his lot. How is it that in today's world we still have issues with assigning the right people to care for certain others? You are a fine example to us all and your writing speaks volumes.
Julie

Oklahoma City, OK

#3 Jan 30, 2007
Thank you for posting this. I am quite familiar with Willowbrook, but I didn't know it was the 35 year anniversary. The mainstream press needs to pick up more of this stuff. Most people don't even know about Willowbrook.
As a direct caregiver for adults with developmental disabilities, I am CERTAINLY aware of the absurdly small amount of money we make and how little training we receive for such a huge responsibility. The responsibility of not just in training and in teaching individuals, but often for those who have medical issues as well as cognitive impairments, their very lives are in our hands.
I was always offended by the willingness of private employers and the state to pay only as little as they can get away with. If I had a person in my family in need of care, I would choose the best trained person and pay him or her as much as I could, out of sheer respect for my family member. The fact that my employers and the state think so little of our clients, well, that's offensive.
I am so glad your brother has you and that you have him. I am so glad you are making decisions in his best interest. Don't neglect your needs either, btw.
Margaret McGrath

Chagrin Falls, OH

#4 Feb 3, 2007
Allen:

I too have a connection to Willowbrook. My cousin was there. He now lives in a group home in New York as well. I also have a brother who has a disability. Luckily my parents moved to Jersey, otherwise he would have been at Willowbrook.

I also work in the field with individuals with disabilities. I now live in Ohio, we too have homes for individuals. If family members or the indivduals want to learn something new we include that in their service plan. Its called active treatment. Yes, your brother should have speech therapy to improve his speech. I agree some agencies underpay their staff, but I would than question the agency what they are doing. Funding is tight but your brother has a right to learn regardless of his age. Don't let any agnecy tell you differently. And because someone gets upset yelling, screaming etc.and they just let them do that, that is unacceptable. They should be working with indivduals to help express themselves so we can understand what it is they want or need. I question the agency that let this go on. One thing that occurs with providers of services, is yes they underpay there staff, they don't adequtely train their staff and unfortunately because its low paying they hire many young people who view this as adult day care.Don't get me wrong there are many good people who work with indivduals and do make an impact. You and your brother have the right to find the best for him.

Good luck to you and your brother..
Elmer Cerano

Lansing, MI

#5 Feb 7, 2007
Thank you for writing this, and thank your brother for surviving.
Warren

Smyrna, TN

#6 Feb 7, 2007
...A seed grows in Brooklyn. Thanks, Allan.
sdd

United States

#7 Feb 7, 2007
where the willowbrook school used to be is now the college of staten island cuny-2800 victory blvd. s.i.n.y. 10314
Reese

Thomson, GA

#8 Feb 7, 2007
I am so glad that you are helping your brother to live as normal a life as possible. We all learn something new everyday and it is great to know that your brother is getting the chance to learn new things and improve his health.
frank tetto

Levittown, NY

#9 Feb 7, 2007
I too remember the closing of Willowbrook. I also remember working in a group home in PA. and none of the nine individuals in the 3 separate residences wanted to return to the institutional setting.
In 1998, my daughter Maria was struck by a vehicle and I joined the disability world on a very personal basis. Maria was 12,once she was injured I became quickly alarmed at how much our society was willing to give up on Maria. At first it was fighting the health care system to simply give her a chance at life and recovery. We won most battles. After 25 months in a hospital/rehabilitation facility my wife and I were confident Maria was no longer medically fragile and could return home.
Maria will always need 24/7 care and supervision. The cost to have Maria in an institution was over 200,000 per year. When we asked about what assistance we could expect when Maria returned home, we were told there was no help and Maria could remain at the facility.
We brought Maria home with zero supports. It was a good decision. Maria has thrived at home. We have advocated and won some battles for not only in home supports but just as important for self-directed supports.
Today Maria is in her own apartment attached to our home. She has staff we hire and train and she has thrived and continued to amaze.
We have started an organization. We work to change public policy to provide opportunities for all persons to live in the family, the home and community of individual choice.
The cost of Maria's Self Directed life is not even 50% of her out of home placement.
Our story is not unique. Indeed the number of persons in high cost, segregated out of home placements is in the hundreds of thousands. It does not have to be this way. We all know intuitively, "there really is no place like home" Thank You.

Kind Regards
Frank Tetto /Co-founder My Community Care Team

"Advocates for family, home and community inclusion"
Tara

AOL

#10 Oct 20, 2010
I can certainly see why developmental centers garnered the reputation they deserved and its easy to understand why community integration sounds so attractive. But...can't we have both??

Here is a link to a place owned by NJ I thought would make a smashing hated community for disabled people to live and work[strictly voluntary, of course} and I just don't understand why, with proper administration it couldnt fly.

http://www.disneyshercs.com/FORTHANCOCK.htm

My autistic epileptic retarded son {and yes,darn it, he Is retarded, not "disadvantaged," he is incredibly vulnerable and child like and helpless}lives at home with us and after an unbelievably drawn out 8 month cat fight with DDD we finally got a paltry little budget going for 5 hours of day care a day....half of which would be taken up by his transportaion if I was'nt willing to drive 68 miles a day to get him to the program. The reason I am willing to do this is that this particular program is very structured and theraputic, very one on one with an eye towards really improving the clients skills. All too may day care centers are "community based" which means they go to the park and feed the ducks a loit.Or sit for hours in a big room with a box of checkers and a cupcake.

Check out my link...can anyone else see the beayty of this plan IF it is run by an association of parents????

PS I dont want to hear about money and budgets. This country has More money that it knows what to do with. If Bush could Triple our aid to Africa in 2006 to 9 Billion dollars{Washington Post, 2006} we can afford to give our disabled populations the opportunities they deserve.
Tara

AOL

#11 Oct 20, 2010
ERRATUM!!! I meant GATED community, a private Gated community retreat for people who prefer a more protected structured environment.

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