Frankie Macias

Still waiting….

Frankie Macias was born in 1967, in California. He was his mother Kathy’s first child. A few years later Frankie welcomed a loving baby sister to his little family.

Frankie was a shy, kind, and gentle child who also happened to have a developmental disability.

Cornelia de Lange Syndrome

When Frankie’s mom became single, times were often hard.

She moved her little family to New Jersey, where she worked long hours so that Frankie and his sister could have a secure

and happy childhood.

Frankie started school when the right to special education was newly won. Inclusion was unknown in most places, and seldom considered a possibility.

But Frankie’s mom was a pioneer. She joined the PTA to promote school inclusion. She even insisted that her church include Frankie in regular classes for religious instruction, rather than putting him in a separate class.

He enjoyed and succeeded in these inclusive community activities.

Frankie’s mom made sure that he joined a regular Boy Scout Troop and became a member of St. Ann’s Drum and Bugle Corps.

When he was older Frankie studied karate, learning a lot about personal discipline and responsibility.

Sadly, within Frankie’s school the mind-set of segregation persisted. Years later, Frankie related that some students organized a weekly “Retard Day” and gave points for slapping students in the special education classes. He said that he was slapped in the head “about a million times,” but did not tell for fear it would get worse.

Still Separate and Unequal, was published in 2004 by the NJ Council on Developmental Disabilities. For a copy, go to

http://www.njddc.org/

Frankie lived at home with his mother and sister until 1988, when he was almost 21 and ready to graduate. He expressed a strong desire for a home of his own, and his mother worked hard to make this happen. Frankie tried two group homes, the second one, privately funded through his mother’s insurance, was far away in Texas. Both failed to meet his needs. A third facility in Nebraska also proved inadequate, and was later shut down due to its glaring deficiencies.

Frankie’s mother tried again to assure that Frankie would receive the services he needed, and receive them near her home. For months, the N.J. Division of Mental Health and the Division of Developmental Disabilities each claimed the other agency was responsible for Frankie.

This was a frightening time for Kathy, because her insurance on Frankie was about to run out.

In October 1992, New Jersey’s Division of Developmental Disabilities (DDD), the state agency responsible for adult services, finally agreed that it should provide a home for Frankie.

In 1993, Frankie was placed on the DDD’s Priority 1 Community Placement Wait List. Frankie and his family breathed a sigh of relief.

But “Priority 1” turned out to be a misnomer. In 1994, there was still no community placement for Frankie. The state offered him an emergency placement in a state institution, 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.

Bait and SwitchA bait and switch is a form of fraud in which the fraudster lures in customers by advertising a product or service and then reveals to potential customers that the advertised good is not available but that a substitute is. The goal of the bait-and-switch is to convince some buyers to purchase the substitute good as a means of avoiding disappointment over not getting the bait.

New Lisbon Developmental Center (NLDC) was built in 1914, and is located in an undeveloped area of rural New Jersey called the Pine Barrens. About 463 adults are housed there.

Residents get a partitioned sleeping area (the walls do not come up to the ceiling) and a group space for toileting and showering.

Above: a satellite image of NLDC from Google Maps. A search for photos of the facility returned no results.

In 1996, two years after his emergency placement, Frankie finally was offered community services. He and his family were overjoyed!

They chose a wonderful agency with an excellent reputation, developed a service delivery plan, and Frankie was more than ready to go.

At the last minute, the Division of Developmental Disabilities pulled the plug. DDD claimed that there was no money left in its budget for Frankie to move to the community after all.

There was, however, plenty of money to continue paying the very high cost of NLDC.

In 1999, a Supreme Court decision called Olmstead told the states to stop dragging their feet about serving people like Frankie in their communities. States were now supposed to act in a timely manner to afford people with disabilities the benefits of real homes and participation in everyday life. Frankie’s mother, Kathy, followed this decision avidly, but in the end it had no impact on Frankie’s plight.

Over the years, Frankie has reported both physical and sexual assaults at NLDC. He expresses a fear of the group shower facilities and often will not wash. He finds the food unappetizing, and often does not eat. He complains of noise and difficulty sleeping. He expresses boredom and loneliness. Talking to his mother, he sometimes weeps.

In 2001, after 7 years of broken promises, Frankie had a particularly scary day in which his pleas for staff to help him were not heard. He was left alone in his room without meals or supervision.

And Frankie finally did something desperate: he lit a fire, with dangerous items he found lying about. It was quickly doused and no one was injured.

Frankie’s act was a loud cry for help, but he received none. Instead of providing him with an active, positive treatment plan, the New Jersey Department of Human Service’s own internal police force – the “Human Services Police” – decided to take Frankie to Court.

Although Frankie was already in an institution entrusted with providing care for his disability, the Human Services Police sought to have him locked up in jail with criminal offenders, where his disability would put him at even greater risk.

The Human Services Police brought Frankie to court in handcuffs, without an attorney, and asked the Judge to order that he be locked in a prison-like building at NLDC called the “Moderate Security Unit” (MSU) until his case was heard. The Judge refused.

New Lisbon then had Frankie sign papers that he could not read.

The papers stated that Frankie agreed to be placed in the Moderate Security Unit.

The MSU was built as a place where offenders from the community who are suspected of having a developmental disability are placed pending diagnostic work.

To keep inmates confined, the Moderate Security Unit is surrounded by a high fence that curves inward at the top.

Above: Another satellite view of New Lisbon showing the Moderate Security Unit.

Frankie remained locked up in the MSU for almost 3 years. The charges against him were eventually dismissed; due to his disability, he was found incompetent to stand trial. When there was no longer a charge on which to hold him, Frankie’s mother was informed that he would continue to live in the MSU as a “guest” of that facility.

In the MSU, Frankie had to be buzzed out of his cell whenever he needed to use the bathroom. Sometimes there was no one to buzz him out; he took to saving paper cups for these emergencies. When his beloved sister married and asked that Frankie walk her down the aisle, he was denied permission to attend the wedding.

Frankie’s mother and friends eventually convinced the New Jersey Legislature to pass a law protecting other institutional residents from being put in the MSU without a Court Order. Although it was too late to help Frankie, others would be spared.

Frankie was one of the NLDC residents whose plight was described in the Department of Justice’s report. New Jersey agreed to take corrective action.

In 2002, The U.S. Department of Justice (DOJ) informed then-Governor McGreevey of its finding of serious and dangerous deficiencies at NLDC. The DOJ announced that it would pursue a lawsuit unless New Jersey entered into an agreement to fix them.

In 2003, with NLDC under the supervision of a Special Monitor reporting to the Department of Justice, Frankie’s treatment team again recommended him for community placement.

When told no N.J. agencies could accept Frankie at the time, Kathy again began to search for providers in other states.

Unfortunately, DDD claimed Frankie “did not meet the criteria for out-of-state placement,” and so he remained at New Lisbon.

In 2004, Frankie’s mother received a letter, recommending that he go to live in her apartment and promising him 4 hours of services a day under DDD’s Real Life Choices program.

Since Kathy continues to work long hours and cannot expect Frankie to organize his days by himself, she found this proposal incredible: how could Frankie be judged to need such a restrictive setting one day, and sent to live almost alone the next?

The Real Life Choices program was created in 2003 as part of N.J. “New and Expanded Options” plan. While Frankie could not obtain community placement under Real Life Choices, he was affected by another part of the plan: instead of keeping 50% of his SSI check to reimburse DDD for his care, the state would now take 75%.

In early 2007, with New Lisbon still being monitoring under its Settlement Agreement with the Department of Justice, Frankie’s mother again received a letter from the Division of Developmental Disabilities (DDD) saying that Frankie was eligible for community placement. This time a DDD staff person came to her home and Frankie’s needs were fully discussed. He offered Frankie a real plan, with the promise of a home of his own and 24 hour staffing.

Frankie and his mother were thrilled to learn that the same wonderful agency that was ready to provide him a home in 1996 was still eager to work with him.

Frankie began to talk about where he wanted to live, the old friends he wanted to visit, the kind of job he would find, about studying karate again, and about his dream of adopting a dog so that he could share his life with a loving companion.

In April 2008 Elin Howe, the Court-appointed Special Monitor supervising the Settlement Agreement between NLDC and the federal Department of Justice, issued her eighth report. Among its findings was that New Lisbon continued to misidentify learned behaviors as primary symptoms of mental illness, casting doubt on its ability to create behavior support plans, teach replacement behaviors, or determine whether psychotropic medications are effective. This issue had been raised in previous Monitoring Reports. Nevertheless, Elin Howe left soon afterward to become Commissioner of the Massachusetts Department of Developmental Services.

Before and after: Learned behaviors still appear in Frankie’s records as symptoms of a psychiatric condition

In the months following, all promises to allow Frankie to leave New Lisbon completely unraveled.

As in the past, DDD stopped the clock on Frankie’s plans for community placement at the very last minute, just when he dared to believe his dreams were about to come true.

This time, the Division of Developmental Disabilities said that Frankie needed a “risk assessment” before he could leave. Once this report was done, both DDD and New Lisbon Developmental Center began recommending a series of revisions to Frankie’s community living plan – the same plan with which it was originally pleased.

With each demand for revision, the entire plan was sent back to the community agency for resubmission. Each resubmission re-started the approval process. By the end of 2008, almost 2 years after DDD’s latest promise of immediate action and 14 years after the start of Frankie’s temporary emergency placement, the paperwork was going around and around with no end in sight. And Frankie’s physical and mental condition began to spiral down….. also with no end in sight.

Frankie is now in a state of constant agitation and fear. He is not receiving appropriate treatment, his medications are out of whack, and this shy and quiet man is doing things he never did before he entered New Lisbon, such as hitting people.

Frankie described by his treatment team in Texas, shortly before his arrival at New Lisbon.

Frankie described by New Lisbon staff today.

The Human Services Police continue to press criminal charges against Frankie for each of these actions, despite the fact that a nationally-recognized expert brought in by his family diagnosed Frankie as suffering from psychological trauma.

This expert reported that Frankie needs a quiet, predictable, supportive place of his own in which to recover. The Human Services Police appear to be steering him toward jail.

Frankie’s actions caused him to be taken to a psychiatric hospital three times in December 2008. While there, he became much calmer.

Hospital staff told Frankie’s mother that “He is gentle, respectful, and if you treat him with respect he responds in kind.” Yet when his hospital stays were over, New Lisbon insisted that Frankie be brought back to the facility in restraints.

Frankie was placed in the residential unit where he had previously been threatened, and required to share quarters with individuals who have a record of committing assaults, despite his pleas to be housed in less frightening quarters. He was attacked in the bathroom not long after his arrival.

Frankie is now spending many nights on a couch in the Administrative Building, where he feels safer. He is afraid to enter the group showers. He can hardly eat, and his clothing now hangs on him.

Above: The Administration Building at NLDC

Frankie was invited home for the Holidays by his mother and by his sister, but permission to leave New Lisbon was denied.

When his sister, his only sibling, had her first child just before Christmas, Frankie was denied permission to visit his new niece. When Frankie tried to place a photo of the new baby in his sleeping quarters, he was told that pictures were not permitted.

Frankie’s mother continues to call and email the head of N.J.’s Division of Developmental Disabilities, Ken Ritchey, and the CEO of New Lisbon, Jeffrey Schroeder, to update them on Frankie’s condition and request their help.

She uses the email option that automatically reports back to the sender when an email is received and opened. The reports from Mr. Ritchey, and sometimes Mr. Schroeder, are lately coming back with the message “deleted without being read.”

What will the New Year bring for Frankie?

Will this unspeakable situation continue, or will he finally find the “life, liberty, and pursuit of happiness” that he deserves?

What can YOU do to help?

Sign the Free Frankie online petition, and ask your friends to sign it too:

                  http://www.ipetitions.com/petition/FreeFrankie/index.html

1.

Governor Chris ChristieP.O. Box 001Trenton, NJ 08625

Contact Governor Christie directlyand ask him to Free Frankie

Or send him an email

http://www.state.nj.us/governor/contact/

2.

Send copies to the New Jersey Department of Human Services

Jennifer Velez, CommissionerDepartment of Human Services140 East Front Street Trenton, NJ 08625

Jennifer.Velez@dhs.state.nj.us

Dawn Apgar, Assistant Commissioner Department of Human Services, Division of Developmental Disabilities140 East Front StreetTrenton, NJ 08625

Dawn.Apgar@dhs.state.nj.us

3.

If you are in New Jersey, it would also be helpful to contact your state legislators and ask them to get involved.

Here’s how -

•Go to http://www.njleg.state.nj.us/•Use the “Find Your Legislator” link•Open your legislator’s web page, where you will find his or her contact information, including a link to send email.

4.

Frankie’s family and friends will continue to post information on this web site. We look forward to the day when we can post pictures of Frankie, smiling and home at last, and send you a message of heartfelt thanks.