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.
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.
He enjoyed and
succeeded in
these inclusive
community
activities.
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
Still Separate and Unequal, was published in gave points for slapping
2004 by the NJ Council on Developmental students in the special
Disabilities. For a copy, go to
education classes. He
http://www.njddc.org/
said that he was slapped
in the head “about a
million times,” but did
not tell for fear it would
get worse.
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
Bait and Switch
for Frankie. The state offered
A bait and switch is a form of
him an emergency placement in
fraud in which the fraudster lures a state institution, New Lisbon
in customers by advertising a
product or service and then Developmental Center (NLDC),
reveals to potential customers explaining that this
that the advertised good is not
available but that a substitute is. arrangement would fill the gap
The goal of the bait-and-switch is
to convince some buyers to until a home and services in the
purchase the substitute good as community were ready. With no
a means of avoiding
disappointment over not getting other options available to her,
the bait.
Kathy reluctantly agreed.
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)
Above: a satellite image of NLDC from Google Maps.
A search for photos of the facility returned no results. and a group space for
toileting and showering.
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.
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.
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 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,
The Real Life Choices program was created
in 2003 as part of N.J. “New and Expanded
recommending that he go
Options” plan. While Frankie could not obtain to live in her apartment and
community placement under Real Life
Choices, he was affected by another part of promising him 4 hours of
the plan: instead of keeping 50% of his SSI
check to reimburse DDD for his care, the
services a day under DDD’s
state would now take 75%. 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?
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
Above: The Administration
hardly eat, and his clothing now
Building at NLDC hangs on him.
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?
1.
Sign the Free Frankie online petition,
and ask your friends to sign it too:
http://www.ipetitions.com/petition/FreeFrankie/index.html
2.
Contact Governor Christie directly
and ask him to Free Frankie
Governor Chris Christie
P.O. Box 001
Trenton, NJ 08625
Or send him an email
http://www.state.nj.us/governor/contact/
3.
Send copies to the New Jersey
Department of Human Services
Jennifer Velez, Commissioner
Department of Human Services
140 East Front Street
Trenton, NJ 08625
Jennifer.Velez@dhs.state.nj.us
Dawn Apgar, Assistant Commissioner
Department of Human Services,
Division of Developmental Disabilities
140 East Front Street
Trenton, NJ 08625
Dawn.Apgar@dhs.state.nj.us
4.
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.
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.