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UNITED STATES DISTRICT COURT
NORTHERN DISTRICT OF ILLINOIS
EASTERN DIVISION
UNITED STATES,
Plaintiff,
v.
NORTHERN ILLINOIS SPECIAL
RECREATION ASSOCIATION,
Defendant.
)
)

No.
Judge

UNITED STATES’ COMPLAINT

The United States of America, by its attorney, Gary S. Shapiro, Acting United States
Attorney for the Northern District of Illinois, alleges that the defendant Northern Illinois Special
Recreation Association (NISRA) discriminates against individuals with epilepsy on the basis of
disability, by denying them an equal opportunity to participate in the recreational programs
NISRA provides because it refuses to administer a potentially lifesaving anti-seizure medication.
This discrimination is in violation of title II of the American with Disabilities Act (ADA), 42
U.S.C. §§ 12131 et seq., and its implementing regulation, 28 C.F.R. Part 35. In support of its
complaint for declaratory and injunctive relief, the United States avers as follows.

Jurisdiction and Venue

1. This court has jurisdiction of this action under 28 U.S.C. §§ 1331 and 1345, and
42 U.S.C. § 12133. The court may grant the relief sought in this action pursuant to 42 U.S.C.
§ 12133 and 28 U.S.C. §§ 2201 and 2202.

2. Venue is proper in this district pursuant to 28 U.S.C. § 1391, in that all of the
claims and events giving rise to this action occurred in this district.
Parties

3. The United States Department of Justice is a federal agency responsible for
administering and enforcing title II of the ADA, 42 U.S.C. §§ 12131, et seq.

4. The defendant Northern Illinois Special Recreation Association (NISRA) is an
inter-government, tax-exempt organization designed to serve children and adults with
developmental, physical, neurological, emotional, and learning disabilities by providing yearround
recreation programs. NISRA is a “public entity” within the meaning of the ADA, 42
U.S.C. § 12131(1), 28 C.F.R. § 35.104, and is therefore subject to title II of the ADA, 42 U.S.C.
§§ 12131, et seq., and its implementing regulation, 28 C.F.R. Part 35.
Facts

5. NISRA is formed from 13 park districts and municipal recreation departments in
northern Illinois and is headquartered in Crystal Lake, Illinois. NISRA provides year-round
recreational activities for children and adults with disabilities in northern Illinois. These
programs are organized according to age group and disability classification, and include weekly
therapeutic recreation programs, Special-Olympics training programs, social events, special
weekend trips, and a variety of summer camps. These activities are run by NISRA staff and are
generally hosted at one of the 13 associated park district facilities. NISRA also offers “inclusion
services” for individuals with disabilities who can participate in a traditional park district
program with the assistance of an aide.

6. NISRA employs no medical personnel for its programs, but it hires staff,
including camp counselors and site directors, who have experience working with individuals
with disabilities. Typically, one counselor is responsible for the supervision of two to four
participants, but if needed, NISRA will provide one-on-one service. Counselors are also
responsible for assisting individuals who need specialized personal care, including feeding,
toileting, and changing clothes or diapers. NISRA counselors and site directors attend 12 to 16
hours of orientation and training, covering general information about disabilities, adaptive
activities, behavior management, and first-aid and emergency procedures.

7. NISRA staff dispense medication if a participant’s parent or guardian requests it.
In addition to regularly administering over-the-counter and prescribed oral tablets and liquid
medications, NISRA staff: (1) administer epinephrine auto-injector shots (such as EpiPen) to
children experiencing life-threatening allergic reactions; (2) dispense asthma medication to
children with asthma; and (3) feed children with gastrostomy feeding tubes. The epinephrine
auto-injector is pre-filled with a single dose of epinephrine and packaged in a plastic autoinjector.
To use the auto-injector, NISRA staff must jab it against the outer thigh of the patient,
which engages a spring-loaded hypodermic needle and delivers the epinephrine.

8. NISRA serves children and adults who have been diagnosed with epilepsy, a
neurological disorder defined as a tendency for recurrent seizures that affects about three million
people in the United States. Seizures are symptoms of abnormal brain activity that vary from a
momentary disruption of the senses, to short periods of unconsciousness or staring spells, to
convulsions. Prolonged seizures lasting longer than ten minutes are extremely dangerous and
can cause serious brain injury or even death. Prolonged seizures may also manifest as cluster
(repetitive) seizures lasting the same period, from which the patient does not regain
consciousness.

9. NISRA staff are specifically trained on how to respond to seizures pursuant to
NISRA’s seizure management policy. Participants with a history of seizures must submit a
seizure plan in which their doctor describes the type of seizure(s) they experience, the
medications they currently take, and the protocol to follow in the case of a seizure. If a seizure
occurs, NISRA’s policy requires the nearest staff member to move the other participants away
from the area to preserve the person’s privacy. The staff member then eases the person onto the
ground and turns him onto his side. Additionally, the staff member is directed to follow the
person’s seizure plan to the best of his ability and to call 911 under certain circumstances.

10. M.M. is a 17-year-old female, who lives with her parents in McHenry County,
Illinois. M.M. was diagnosed with epilepsy in 1994. In addition to having epilepsy, M.M. has
an IQ of 69 and low muscle tone as result of a stroke she had when she was younger.

11. M.M. is a qualified individual with a disability within the meaning of the ADA,
42 U.S.C. §§ 12102(1) and 12131(2) because her epilepsy is a physical impairment that
substantially limits her major life activities and her neurological functions.

12. M.M. has experienced approximately 30 tonic-clonic seizures (commonly known
as grand mal seizures) over the last 10 years, with some of them lasting longer than one hour. As
a result of her prolonged seizures, M.M.’s doctor prescribed her Diastat AcuDial (Diastat), which
is the only FDA-approved medication for out-of-hospital treatment of emergency, prolonged
seizures. Diastat is a gel form of diazepam, a central nervous system depressant (brand name
“Valium”) that is used to stop seizures, thereby preventing brain damage or death that could
result if seizures persist. Diastat works most effectively if administered within five minutes of
the onset of the seizure. The longer it takes to administer Diastat, the less effective it is in
arresting an ongoing seizure.

13. Diastat is administered rectally using a pre-filled plastic syringe with a flexible
plastic tip. This form of administration allows the medication to act quickly and safely. The
most common side effect of Diastat is sleepiness, and there are no adverse side effects when
administered incorrectly, such as when the person is not actually experiencing a seizure.
Following standard procedures, as prescribed by the treating physician, lay persons can easily
and safely administer the medication when a prolonged seizure or cluster of seizures occurs.
Diastat was specifically developed to be administered by people without medical training, such
as parents, teachers, camp counselors, and caregivers, and can be used at home, school, work, or
when traveling.

14. M.M.’s doctor developed a seizure plan that describes what her seizures look like,
how to treat her seizures, and when to call 911. This plan directs that Diastat be administered
immediately upon the onset of a tonic-clonic seizure.

15. M.M. has received Diastat approximately 20 times over the last 15 years. M.M.’s
mother, father, and several of her siblings all have administered Diastat at least once, including
her youngest sister who was 13 years old at the time. After receiving Diastat, M.M.’s seizures
usually begin subsiding within two to three minutes. She has never experienced any adverse side
effects from Diastat.

16. In 2007 and 2008, M.M. participated in NISRA’s summer camp program, as well
as other NISRA programs during the school year. At that time, NISRA agreed to administer
Diastat if needed, but at no time during this period did M.M. suffer a seizure that required
Diastat.

17. After the 2008 summer camp session, however, NISRA changed its policy to no
longer administer Diastat. NISRA’s current policy is to follow the participant’s seizure plan as
closely as possible, but instead of administering Diastat, it will call 911 under circumstances the
parents identify.

18 M.M.’s parents requested that NISRA continue to accommodate M.M. by
administering Diastat if needed, but NISRA refused. Instead of allowing its staff members to
administer Diastat, NISRA offered that M.M.’s parents could hire a caretaker or send a family
member to accompany M.M. and administer Diastat, if needed. If no caretaker was provided,
NISRA told M.M.’s parents that it would follow its standard policy for seizure management, and
if there was an emergency, it would call 911.

19. As a result, M.M. did not attend any NISRA programs in 2009 or 2010 because
her parents did not want to risk M.M. having a tonic-clonic seizure without the assurance that
M.M. would receive Diastat when it could save her life rather than whenever paramedics might
arrive later.

20. Notwithstanding NISRA’s policy against administering Diastat, M.M.’s parents
decided to take a chance and enroll M.M. in the 2011 NISRA summer camp because she had not
experienced a tonic-clonic seizure in the previous five years and had been entirely seizure free
for six months. Although M.M.’s parents were concerned about sending her to camp without
having Diastat administration available, they did so because they did not want M.M. to miss out
on an important opportunity to develop socially and have fun. M.M. attended 2011 summer
camp without incident.

21. Since the 2011 summer camp, however, M.M. has had several additional tonicclonic
seizures. M.M. desperately wants to participate in future NISRA summer camps, because
it is the only summer camp available to her. Given the recent onset of her prolonged seizures,
however, NISRA’s continued refusal to administer Diastat makes M.M.’s participation in any
NISRA camp or program very risky to her health.

22. N.R. is an eight-year-old girl who lives with her parents in Crystal Lake, Illinois.
N.R. was diagnosed with epilepsy in 2005. Other than being highly allergic to certain foods,
N.R. has no other major illnesses and no cognitive deficiencies.

23. N.R. suffers from several different types of seizures and has a history of
prolonged seizures, with her longest lasting 90 minutes. As a result of her prolonged seizures,
N.R.’s doctor developed a seizure plan that directs that Diastat be administered in two cases: (1)
immediately upon the onset of a tonic-clonic seizure; or (2) when she is observed staring (partial
complex seizure) and unresponsive for over one minute.

24. N.R. is a qualified individual with a disability within the meaning of the ADA, 42
U.S.C. §§ 12102(1) and 12131(2) because her epilepsy is a physical impairment that
substantially limits her major life activities and her neurological functions.

25. Because of N.R.’s epilepsy, she qualifies for NISRA’s inclusion services where
NISRA provides a full-time aide to assist N.R. while she participates in a Crystal Lake Park
District program. N.R. registered to participate in the Crystal Lake Park District’s 2011 summer
camp and requested that the NISRA aide be allowed to administer Diastat if needed. NISRA
refused N.R.’s request and informed her parents that the NISRA aide would only monitor N.R.
for signs of seizure and would call 911 if a seizure occurred.

26. Notwithstanding NISRA’s refusal to administer Diastat, N.R.’s parents allowed
her to participate in the 2011 summer camp because N.R. had not had a tonic-clonic seizure in
the previous four years. Although N.R. had no seizures during and since the 2011 summer camp,
her parents remain concerned about what will happen if N.R. needs Diastat at camp and cannot
get it.

27. N.R.’s parents want N.R. to participate in future Crystal Lake Park District
summer camps, but they also want NISRA to agree that its aide will administer Diastat if needed.
Violations of ADA

28. The allegations of Paragraphs 1 through 27of the complaint are hereby realleged
and incorporated by reference.

29. NISRA’s policy refusing to administer Diastat to individuals with epilepsy
violates title II of the ADA, 42 U.S.C. §§ 12132, and its implementing regulations, 28 C.F.R.
Part 35, because defendant’s conduct:

1. excludes individuals with disabilities from participation in and denies
them the benefits of the services, programs, or activities of a public entity,
in violation of 42 U.S.C. § 12132 and 28 CFR §35.130(a);
2. does not afford qualified individuals with disabilities an opportunity to
participate in or benefit from the services, programs, or activities of a
public entity that is equal to that afforded others, in violation of 42 U.S.C.
§ 12132 and 28 CFR §35.130(b)(1)(ii); and
3. fails to make reasonable modifications in policies, practices, and
procedures when the modifications are necessary to avoid discrimination
on the basis of disability, in violation of 42 U.S.C. § 12132 and 28 C.F.R.
§ 35.130(b)(7).

Prayer for Relief

WHEREFORE, the United States prays that the court:

A. Grant judgment in favor of the United States on its complaint and declare that the
defendant has violated title II of the ADA, 42 U.S.C. §§ 12131, et seq. and the relevant
implementing regulations;

B. Enter a preliminary and permanent injunction requiring defendant to administer
Diastat anti-seizure medication to participants in NISRA programs as medically required; and

C. Order such other appropriate relief as the interests of justice require.

Respectfully submitted,
ERIC H. HOLDER, JR.
Attorney General
By: _______________________
THOMAS E. PEREZ
Assistant Attorney General
Civil Rights Division
GARY S. SHAPIRO
Acting United States Attorney
By: s/ Patrick W. Johnson
PATRICK W. JOHNSON
HARPREET CHAHAL
Assistant United States Attorney
219 South Dearborn Street
Chicago, Illinois 60604
(312) 353-5327
(312) 353-1996
patrick.johnson2@usdoj.gov