The Bazelon Center for Mental Health Law
calls it “barbaric.” NAMI calls it “unthinkable.”
We call it the Devil’s Deal. Custody
relinquishment for mental healthcare. That’s the
politically correct name. In some circles,
it has become so accepted, it doesn’t even
have a negative connotation. Trading custody
rights for mental healthcare. Even the
most desensitized government workers cringe
when hearing it phrased this way. It is
easy to discount the tragedy by failing to
look at the consequences.
A clinical case defaults to child welfare
when a family has a child, who is too dangerous
to function within a family setting, due to
mental illness, and fails to attain funding for the
exorbitant cost of residential treatment.
Child welfare and juvenile justice personnel then
view what is really a clinical case, with an
“abuse lens.” The family is investigated and
charged with abuse, neglect, or both. Often,
they are also “indicated” for child abuse or
neglect, placing their names on the state
central register of “indicated perpetrators.” The
family must fight in Juvenile Court to have
the neglect/abuse charge amended to no fault
dependency, before proceeding to
Administrative Law Court to have their names
expunged the list of child abusers.
Meanwhile, their mentally and emotionally disordered
child is housed in a group home along with
child criminal offenders, having no contact
with his family for up to 60 days before
being given treatment and reunited with his
family. However, the parents continue to be
criminalized, the child remains a ward of the
state, the caseworkers are complaining they
are overworked, and the state is spending
funds unnecessarily processing parents of
mentally ill children through the courts.
Click here to see the video, “
,” which depicts
the Hoy family’s ordeal and to
learn more about the Hoy family’s federal
EPSDT lawsuit, which is slated to be a
landmark case, with the goal of abolishing
custody relinquishment for Medicaid eligible
children.
EPSDT is an acronym for Early, Periodic,
Screening, Diagnostic, and Treatment. This is
a provision of federal Medicaid law which
states, “if a practitioner of the healing arts
deems that a treatment is medically
necessary, to correct or ameliorate a condition, the
state must provide it, whether or not it is
covered under any other state plan. If the state
cannot provide it, they must arrange for
it.”
EPSDT is not an option. It is an entitlement
for Medicaid eligible children. “…the state
must provide it, whether or not it is
covered under any other state plan…” This means
families should not have to apply for the
Individualized Care Grant or try to get funding
from their school district to access
intensive mental healthcare.
“…if the state cannot provide it, they must
arrange for it…” Denying it isn’t an option. If
they cannot provide in Illinois, they must
arrange for it outside of Illinois.
So, if it’s an entitlement that can’t be
denied, why are children being denied admission to
residential centers and why are families
being charged with a crime?
In a word. Licensing. Medicaid requires that
residential treatment centers be licensed as
Psychiatric Residential Treatment Facilities
(PRTF) in order to bill for treatment. Illinois
does have PRTFs, in fact, we have had them
for the last 15 years. They are licensed by
the Department of Alcohol and Substance
Abuse (DASA) and only accept children who
require substance abuse treatment. The
behavioral health residential centers are
licensed by the Department of Children and
Family Services (DCFS) as child care
centers. That’s right, just like a daycare.
Centers with daycare licenses are improperly
licensed to bill for Medicaid.
This means that parents of children with
mental illness concurrent with substance abuse
issues obtain treatment while retaining
custody, in contrast with parents of children with
mental illness alone, who obtain treatment
while losing custody.
Even after bringing this issue before the
state departments including HFS, DMH, DHS,
DJJ, and DCFS, as well as senatorial and
gubernatorial staff, nothing has been done to
rectify the situation.
The state of Illinois has wrongly robbed us
of custody of our son, since April 2008, in
exchange for residential treatment which is
medically necessary. On November 3, 2010,
Collins Law, Naperville, filed a federal
lawsuit on our behalf to force the state to abide by
federal Medicaid law. If we win this
lawsuit, we will return to Juvenile Court in Lake
County to petition the state to return
custody of our son to us. This EPSDT lawsuit will
set a precedent that will prevent the state
from forcing parents to involuntarily relinquish
custody of their children in exchange for
treatment for Medicaid eligible children.
However, the problem will remain for
non-Medicaid eligible children. A large group of
adoptive families recently met with state
Senator Susan Garrett (D), 29th district, to
discuss proposing new legislation for a
Voluntary Placement Agreement. By taking
custody, Illinois draws down Title IV
federal funding, which is used to pay the high cost
of treatment. Federal law does require that
states have responsibility for “care and
placement” in order to receive these funds,
however, Illinois mistakenly believes the law
requires “care and custody.” Voluntary
Placement Agreements would allow families to
access intensive services using federal
funds without losing custody, even if they are not
Medicaid eligible.
During this meeting, we also discussed the
issue of DCFS wrongly charging parents with
neglect. We also asked for assistance in
holding DCFS accountable for blatantly
disobeying DCFS Rule #84 or Lockout, and
placing parent’s names on the list of
indicated perpetrators. This rule clearly
lists for children with mental health histories, who
are dangerous towards their families, DCFS
investigators may NOT be indicated for
neglect or abuse. DCFS continues to ignore
these rules regularly with no accountability.
We encourage victims of DCFS violations to
file a complaint against them with the Office
of Investigator General (OIG).
In response to our family’s complaint, OIG
found that DCFS had never even changed
the records to reflect a no fault dependency
ruling. Instead, DCFS kept the neglect
finding on paper and electronic data files.
OIG required them to correct this. Also, the
investigators never even interviewed our
son’s regular therapists and psychiatrist, as
required by the Lockout Rule #84. In
addition, OIG recommend that DCFS Post Adopt
and Advocacy be provided with information
regarding Voluntary Placement Agreements.
Finally, the investigator and her supervisor
were merely “counseled” in regards to their
inappropriate application of Rule #84 which wrongly
criminalized us.
