It’s all too easy to wrap myself up in my cocoon of life with my little family and my warm-fuzzy relationships with my blogging and other friends. So easy to revel in the progress my child is making as he learns to eat, to walk, run, play, communicate —and to love and be nurtured in a supportive environment.
Every once in a while, I am slapped back into the harsh, cruel reality of what life can be like for so many people with autism and other neurological or developmental delays and disabilities. The truth is that people with any sort of developmental disabilities have their rights denied or violated in countless ways; access to fighting for their legal rights is often far more restricted than the general public realizes. Those that are unable to speak for themselves or who have no one to speak up on their behalf often find themselves in horrifically unspeakable circumstances.
I can fool myself with thinking that “this would never happen to Nik or [insert name of your adorable child here]“ but If something were to happen to Niksdad and I tomorrow, Nik could well find himself placed in an untenable situation. In fact, if something were to happen to Nikolas,he could be removed from our custody and placed into a situation like that of Frankie Macias.
Frankie Macias has been institutionalized at the New Lisbon Developmental Center since 1994. He was sent there by New Jersey’s Division of Developmental Disabilities on a temporary, “emergency” basis to wait until funding for an appropriate community placement became available. He is still waiting.
In his 14 years at New Lisbon, Frankie has experienced numerous physical assaults, sexual assaults, and, for quite some time, the near daily use of 4-point mechanical and chemical restraints. He was denied his right to vote. When his sister asked him to walk her down the aisle at her wedding, he was not permitted to attend. This year, his request to spend Thanksgiving with his family was denied.
In 1998, Frankie reported that staff were placing residents of his cottage in mechanical restraints and leaving them unattended with another resident, who would then beat them up. Fearing for his own safety, Frankie asked the CEO to install hidden cameras. Three years later, in 2001, a resident was found dead in this same cottage. He had been strangled. Earlier that year, another New Lisbon resident was found, beaten and bloody, under his bed. He never regained consciousness. Frankie said to his mother, “Mom, if I die, please don’t let them bury me at New Lisbon.”
In the mildest of terms, New Lisbon is not a nice place to live. In 2001, the federal government agreed, and New Lisbon was decertified following an inspection by the Centers for Medicare and Medicaid. The facility was re-certified in 2002, however, that same year, the U.S. Department of Justice investigated allegations of violence and substandard conditions at New Lisbon and, as a result of its findings, sued the State of NJ for violations of the Civil Rights of Institutionalized Persons Act.
This is the place DDD sent Frankie to wait.
Now, a wonderful organization has offered to provide Frankie with a home of his own and the community-based services DDD promised him over a decade ago. After 14 years of waiting, Frankie could be home for the holidays…
If only DDD would let him go.
Instead, the Division of Developmental Disabilities continues to demand revision after revision of the service plan submitted for Frankie. Meanwhile, back at New Lisbon, his condition continues to deteriorate.
We are asking Governor Corzine to put an end to DDD’s 14-year emergency and Free Frankie NOW!
Please take consider Frankie’s story —it is far from being an exception —and sign the petition. I hope you will pass this along to everyone you know who cares anything at all about basic human rights, decency, and compassion.
As we approach the Thanksgiving holiday next week, I hope you will give thanks for your freedoms and your ability to advocate for yourself or for your loved ones. It should not be taken for granted.
U.S. Department of Justice finding letter, dated April 8, 2003, to Governor James McGreevey can be viewed here or read in summary form on the site of AspergersExpress here.