www.flickr.com
items in CdLS Awareness through Photos More in CdLS Awareness through Photos pool

Wednesday, February 18, 2009

Help free Frankie...

I read this story and my heart breaks. I could not imagine how I would feel if Joey were the one being treated so unfairly. I know you will feel the same way after you read it. To visit the family's website, click here. Please, let's help free Frankie...


Opinion: New Jersey system for independent living turned prison
By Nikki Weingartner.
Published 21 hours ago by ■ Nikki Weingartner


When the birth of a child results in a situation where a disability or handicap seemingly overwhelms the family, more often than not the fight for services seems like an all out war. But what happens when those services hold that person hostage?
Today across America, facilities for individuals with special needs is more the norm than the exception. From highly focused schools and living facilities to job placement programs, therapy and assisted independent living, those who once felt alone are now able to live an equally happy life in a modified environment.


However, for one young man who looked his handicap square in the eyes with the loving support of his mother and family, that desire to be like everyone else turned into his prison where he is still held captive today.

Frankie Macias was born in 1967 with a rare genetic disorder called CdLS, or Cornelia de Lange Syndrome. Although the disorder is mostly diagnosed by observable traits, those with CdLS usually have some form of mental retardation primarily in the mild to moderate category.

Frankie's mom raised her son as a single mom and involved him in activities such as Boy Scouts, martial arts, drum corp and religious activities and was a strong advocate for inclusion of special education children in a time when children with even the mildest of speech delays were segregated from what they called "normal." Although Frankie endured some horrific abuse by classmates during his time in public school, in 1988 he managed to graduate from high school at the age of 21.

His small stepping stones of accomplishment were about to become his ball and chain as Frankie Macias expressed a desire to live on his own and be independent.

His mother had helped him achieve as much normalcy in life as possible so far and unlike most "normal" graduates, her primary role didn't end with a diploma. Frankie's mother worked at finding him an independent living facility but three out-of-state locations proved insufficient, with one being shut down for what was labeled as "glaring deficiencies."

After five years and the state of New Jersey playing a game of tug-o-war about who was ultimately responsible for helping Frankie combined with a mother desperately trying to fulfill her son's wishes of living on his own but whose insurance resource was running dry, good news arrived and the New Jersey Division of Developmental Disabilities stepped up to the plate and put Frankie on a "Priority 1 Community Placement Wait List." However, this list was essentially bogus so in light of the error:


New Lisbon Developmental Center (NLDC), explaining that this arrangement would fill the gap until a home and services in the community were ready. With no other options available to her, Kathy reluctantly agreed.

Frankie was moved from his home to the temporary arrangement, whose institution consisted of partitioned walls and central toilet and showering facilities, with a "heavy emphasis on behavior modification," according to their own website.

Seven years after being held captive in the Lisbon facility with the ever elusive dangling carrot of probability that he would be given a home, always denied just before it happened, and the reports that he was being sexually abused, substantiated by write ups that he was not eating and other depressed behaviours, Frankie set a small fire in his room. No one was hurt and it was quickly extinguished. However, the state apparently was apt to make an example of him. Following criminal treatment in handcuffs, he finally received a transfer to another facility, but not one that was what the family had in mind.

Frankie spent the next three years in a prison like environment called a "Moderate Security Unit" until the charges were eventually dismissed. Even Joseph Lepore and Sean Michael Ryan who plead guilty to setting the dormitory fire that killed three students in New Jersey received lesser sentences of 5 years each, eligible for parole in 16 months. After serving his "time", Frankie remained in the prison camp as a guest of the facility, where even the most basic of needs required him to be electronically authorized. It was told in his story how he voided in saved drinking receptacles when "guards" refused to allow him to go to the restroom.

Today, Frankie Macias has been denied any assistance or community placement. In a loving effort to help her son live independently and defy all odds, the state of New Jersey and its team of professionals has carefully taken a spirited young man and broken him down into "medical categories" for which they have been able to presumably deny his release.

He has been denied the right to see his sister get married, denied the right to spend family holidays with his mother, he was even denied the right to have a simple picture of his baby niece.

A mother's desire to help her son live a "normal" life gone horribly wrong because of a caustic system that doesn't care. Frankie Macias is "still waiting" for placement...

To help in the fight to free Frankie Macias, please visit the family website. There are many different ways for individuals to help, if nothing more than by signing the petition to free this man. However, if you wish to write a letter to free Frankie:

Contact Governor Corzine
Governor Jon Corzine
P.O. Box 001
Trenton, NJ 08625
email him here

send copies to:

Jennifer Velez, Commissioner
Department of Human Services
140 East Front Street
Trenton, NJ 08625
Jennifer.Velez@dhs.state.nj.us


Kenneth Ritchey, Assistant Commissioner
Department of Human Services,
Division of Developmental Disabilities
140 East Front Street
Trenton, NJ 08625
Kenneth.Ritchey@dhs.state.nj.us
This opinion article was written by an independent writer. The opinions and views expressed herein are those of the author and are not necessarily intended to reflect those of DigitalJournal.com


To view the original article on Digital Journal, click here.

7 comments:

  1. I read this earlier and I find it to be completely horrifying!

    ReplyDelete
  2. What is the world coming to...Thanks for sharing!

    ReplyDelete
  3. this story has scared me and i have been so upset about it. i have signed the petition and plan on emailing the governer of NJ asap! i might post about it as well to get it out there!

    thank you for the post!

    ReplyDelete
  4. this story has scared me and i have been so upset about it. i have signed the petition and plan on emailing the governer of NJ asap! i might post about it as well to get it out there!

    thank you for the post!

    ReplyDelete
  5. An example of what we must fight against. So sad. It's heart breaking.

    ReplyDelete
  6. Thanks for posting this Rachelle. I signed the petition! What a horrible nightmare for this young man and his family. The system is beyond broken.

    ReplyDelete
  7. Oh my goodness, what a heartbreaking story :o (

    Justine :o )

    ReplyDelete

Thank your for stopping by our blog! Your kind comments are appreciated!

Our Guestbook