IN THE UNITED STATES DISTRICT COURT

FOR THE MIDDLE DISTRICT OF TENNESSEE

AT NASHVILLE

ALISON ROAN, by her conservator

ROSEMARIE ROAN, and
TRISTEN SHACKELFORD, by his
conservator DENISE HOOLHORST,

Plaintiffs,
Civil Action No. 3:17-cv-01588
v.
Judge Crenshaw
DR. WENDY LONG, in her official
capacity as the Deputy Commissioner of VERIFIED AMENDED COMPLAINT
the Tennessee Department of Finance and FOR DECLARATORY AND
Administration and Director of the Bureau INJUNCTIVE RELIEF
of TennCare and LARRY B. MARTIN, in
his official capacity as Commissioner of the
Tennessee Department of Finance and
Administration,

Defendants.

A. INTRODUCTORY SUMMARY

1. The plaintiffs, Alison Roan and Tristen Shackelford, just turned 21. Born with

severe developmental disabilities, their fragile health has only declined with the passage of time.

For ten and five years respectively, the State has agreed that Alison and Tristen require around-

the-clock professional nursing care to survive. For ten and five years, Tennessee’s Medicaid

program, known as TennCare, has agreed that the least costly place to provide that care is at

home with their devoted families. Now that they have turned 21—and only because they have

turned 21—a state rule dictates that TennCare only provide them the nursing care they need in an

institution. If they and their families insist on staying together, the State will cut their nursing

care below the minimum required to ensure their survival.

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 2. According to their doctors, the nursing care Alison and Tristen require is

equivalent to hospital intensive care unit care with one-to-one nursing support. [Affidavit of Dr.

Michael Miller, January 18, 2018, Attachment D to the Complaint]. The continuous home

nursing they have been receiving have enabled them to remain at home, but any reduction of

such care could be lethal, as “an event of mucus plugging or other respiratory complication

would result in respiratory failure or death for Alison before emergency personnel could respond

to a 911 call to the house. Decreasing her home health nursing hours will significantly increase

her risk for morbidity and mortality and increase hospitalizations …” [Declaration of Dr.

Rebekah F. Brown, December 15, 2017, Attachment C to this Complaint] and “Because Tristen

has cerebral palsy, he does not have the ability to wake himself and take a deep breath if he

experiences apnea. If Tristen stopped breathing during the night, and no one was there to

reposition him or wake him up, he could suffer from brain damage or die from lack of oxygen.”

[Affidavit of Lucinda Maxwell, LPN, January 10, 2018, Attachment F to this Complaint].

3. The State nonetheless refuses to cover more than 20 hours per day of nursing care

for Alison and Tristen, if they remain at home. TennCare will, however, provide continuous

round-the-clock one-on-one nursing care in a hospital intensive care unit as needed, without any

limit other than that it be medically necessary. Thus, Alison and Tristen are facing the prospect

of being forced to leave their family homes and enter a restrictive, segregated intensive care unit,

which is the only setting outside of their homes in which they could receive the one-on-one

nursing services they require to stay alive.

4. Alison and Tristen seek an injunction to prevent the Defendants’ violation of the

Americans with Disabilities Act, which protects them from the isolation and anguish that are

inflicted by needless institutionalization. At issue is not whether TennCare will cover the

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services Alison and Tristen require, but only where it will provide the services. The TennCare

rules decree that the location must be a hospital. On the facts of this case, the ADA supersedes

the state rules and protects their ability to continue to receive needed care at home with their

families.

B. JURISDICTION AND VENUE

5. Jurisdiction is conferred on this Court by 28 U.S.C. § 1331, which provides for

original jurisdiction over all civil suits involving questions of federal law; 42 U.S.C. § 12133,

which provides for original jurisdiction over actions arising under Title II of the ADA; and 28

U.S.C. § 1343(3) and (4), which provides for original jurisdiction in all actions authorized by 42

U.S.C. § 1983 to redress the deprivation under color of State law of any rights, privileges, or

immunities guaranteed by the U.S. Constitution and Acts of Congress.

6. Plaintiffs seek declaratory, injunctive, and other appropriate relief, pursuant to 28

U.S.C. §§ 2201 and 2202; Fed. R. Civ. P. 57; 42 U.S.C. § 1983 and 42 U.S.C § 12132.

7. Venue is proper pursuant to 28 U.S.C. § 1391(b), because a substantial part of the

events or omissions giving rise to the claims occurred in this District.

C. PARTIES

8. Plaintiff Alison Roan is an adult resident of Murfreesboro, Rutherford County,

Tennessee. As authorized by Fed. R. Civ. P. 17(c)(1)(C), she brings this action through her

mother, Rosemarie Roan, who was appointed Alison’s conservator by order of the Chancery

Court for Rutherford County, Tennessee.1

9. Plaintiff Tristen Shackelford is an adult resident of Nashville, Davidson County,

Tennessee. As authorized by Fed. R. Civ. P. 17(c)(1)(C), he brings this action through his

1
. To distinguish plaintiff Roan from her conservator, plaintiff Roan is referred to by her first name.

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mother, Denise Hoolhorst, who was appointed Tristen’s conservator by order of the Seventh

Circuit Court for Davidson County, Tennessee at Nashville, Probate Division.

10. Defendant Dr. Wendy Long is sued in her official capacities as Deputy

Commissioner of the Tennessee Department of Finance and Administration (DFA) and Director

of that Department’s Division of Health Care Finance and Administration (HCFA). Deputy

Commissioner Long oversees all of the health care related divisions within the DFA, including

the Bureau of TennCare (the “Bureau”).

11. Defendant Larry B. Martin is sued in his official capacity as the Commissioner of

the Tennessee DFA, of which HCFA and the Bureau are subordinate agencies. DFA is

Tennessee’s “single state agency,” within the meaning of 42 U.S.C. § 1396a(a)(5) and 42 C.F.R.

§ 431.10, that is responsible for administering the TennCare program. The Bureau is the division

of DFA that directly manages TennCare.

D. THE AMERICANS WITH DISABILITIES ACT

12. Title II of the Americans with Disabilities Act (ADA) prohibits discrimination

against people with disabilities by any public entity:

[N]o qualified individual with a disability shall, by reason of disability, be excluded from
participation in or be denied the benefits of the services, programs, or activities of a
public entity or be subjected to discrimination by such entity.

42 U.S.C. § 12132.

13. Title II of the ADA defines a “qualified individual with a disability” as one who,

“with or without reasonable modifications to rules, policies, or practices . . . meets the essential

eligibility requirements for the receipt of services or participation in programs or activities

provided by a public entity.” 42 U.S.C. § 12131(2).

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 14. The term “public entity” is defined to include “any State or local government,” as

well as “any department, agency, special purpose district or other instrumentality of a State . . .

or local government.” 42 U.S.C. § 12131(1)(a)(A), (B).

15. Pursuant to Title II, the Attorney General of the United States has promulgated

regulations requiring public entities to “administer services, programs, and activities in the most

integrated setting appropriate to the needs of qualified individuals with disabilities.” 28 C.F.R. §

35.130(d).

16. Federal regulations also provide that public entities “may not, directly or through

contractual or other arrangements, utilize criteria or other methods of administration: (i) that

have the effect of subjecting qualified individuals with disabilities to discrimination on the basis

of disability; [or] (ii) that have the effect of defeating or substantially impairing accomplishment

of the objectives of the entity’s program with respect to individuals with disabilities . . ..” 28

C.F.R. § 35.130(b)(3).

17. The Department of Finance and Administration is a public entity under Title II of

the ADA and its implementing regulations.

E. OVERVIEW OF THE TENNCARE PROGRAM

18. Title XIX of the Social Security Act, known as the Medicaid Act, provides

medical assistance to certain eligible individuals. 42 U.S.C. § 1396. The purpose of Medicaid is

to furnish, as far as practicable, “medical assistance on behalf of . . . aged, blind, or disabled

individuals, whose income and resources are insufficient to meet the costs of necessary medical

services” and “to help such families and individuals to attain or retain capability for

independence or self-care . . ..” 42 U.S.C. § 1396 (emphasis added).

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 19. Medicaid is administered at the federal level by the Centers for Medicare &

Medicaid Services (CMS) of the Department of Health and Human Services (HHS). Pursuant to

the ADA, CMS has urged states to avoid unnecessary institutionalization of persons with

disabilities, telling state Medicaid directors that “no one should have to live in an institution or a

nursing home if they can live in the community with the right support.” (Dear State Medicaid

Director letter, January 14, 2000.)

20. Each state decides whether to participate in the Medicaid program, and all 50

states do. Tennessee has participated in Medicaid continuously since 1968. Once a state elects to

participate in Medicaid, it must administer the program subject to federal requirements imposed

by the Medicaid Act and its implementing regulations and the ADA and its implementing

regulations.

21. Each participating state must designate a “single state agency” to administer the

program consistent with federal law. 42 U.S.C. § 1396a(a)(5). By executive order dated October

19, 1999, the Department of Finance and Administration (DFA) became the designated single

state agency in Tennessee.

22. In 1993, Tennessee obtained from the Secretary of HHS a Medicaid

demonstration waiver under Section 1115 of the Social Security Act, 42 U.S.C. § 1315. The

waiver permitted the State to replace its conventional Medicaid program with a demonstration

program called TennCare. The five-year waiver was implemented in January 1994 and has been

periodically revised and renewed since then pursuant to 42 USC § 1396n. Pursuant to the waiver,

all TennCare covered services are now managed by private intermediaries that subcontract with

health care providers. The intermediaries are known as managed care organizations, or MCOs.

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Defendant state officials retain a non-delegable responsibility for ensuring compliance with all

applicable federal laws.

23. The federal waiver exempts the demonstration program from compliance with

only a few specified federal Medicaid statutes and rules. All laws and rules not explicitly waived

remain fully applicable to TennCare. None of the laws and regulations at issue in this case has

been waived, and all remain fully effective in Tennessee.

24. States participating in the Medicaid program must cover certain mandatory

services for most Medicaid beneficiaries. See 42 U.S.C. § 1396a(a)(10)(A)(i)(incorporating 42

U.S.C. § 1396d(a)(1)-(5), (17), (21)). The Medicaid Act also allows states to cover certain other

services at state option. Id. Under the Medicaid Act’s early and periodic screening, diagnosis,

and treatment (EPSDT) mandate, states must cover all medically necessary services, mandatory

and optional, listed in the Act at 42 U.S.C. § 1396d(a) (listing 29 service categories) for children

under the age of 21, regardless of whether a state has chosen to cover optional services for

adults. 42 U.S.C. § 1396d(r)(5).

25. Each service covered in a state’s Medicaid State Plan must be sufficient in

amount, duration, and scope to reasonably achieve its purpose. 42 U.S.C. § 1396a(a)(10)(B), 42

C.F.R. § 440.225.

26. A state may not arbitrarily deny or reduce the amount or scope of a covered

service based solely on the diagnosis or type of illness or condition of the Medicaid recipient. 42

C.F.R. § 440.230(c).

27. Medicaid regulations allow states to place appropriate limits on covered services

based on “medical necessity.” 42 C.F.R. § 440.230(d). Under TennCare rules, a service is

medically necessary if it satisfies each of the following criteria:

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 (a) It must be recommended by a licensed physician who is treating the enrollee or
licensed healthcare provider practicing within the scope of his or her license who
is treating the enrollee;

(b) It must be required in order to diagnose or treat an enrollee’s medical condition;

(c) It must be safe and effective;

(d) It must not be experimental or investigational; and

(e) It must be the least costly alternative course of diagnosis or treatment that is
adequate for the enrollee’s medical condition.

Tenn. Comp. R. & Regs. 1200-13-16-.05(1). TennCare will not pay for items or services that it

determines not to be medically necessary. Tenn. Comp. R. & Regs. 1200-13-16-.06(11).

28. “Private duty nursing” is an optional service under the Medicaid Act. 42 U.S.C. §

1396d(a)(8), 42 U.S.C. § 1396a(a)(10)(A). Private duty nursing is defined as nursing services

provided to persons “who require more individual and continuous care than is available from a

visiting nurse or routinely provided by the nursing staff of the hospital or skilled nursing

facility.” 42 C.F.R. § 440.80. Under the regulation, a state has the option to provide private duty

nursing services in the beneficiary’s home, at a hospital, or at a skilled nursing facility. 42 C.F.R.

§ 440.80(c).

29. TennCare provides private duty nursing services as medically necessary to

children under 21 in accordance with EPSDT requirements. Tenn. Comp. R. & Regs. 1200-13-

13-.01(104)(d). For adults age 21 and over, TennCare provides private duty nursing only to those

whose needs happen to be based on the following circumstances:

only when medically necessary to support the use of ventilator equipment or other life-
sustaining medical technology when constant nursing supervision, visual assessment, and
monitoring of both equipment and patient are required. For purposes of this rule, an adult
is considered to be using ventilator equipment or other life-sustaining medical technology
if he:

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 1. Is ventilator dependent for at least 12 hours each day with an invasive patient end
of the circuit (i.e., tracheostomy cannula); or

2. Is ventilator dependent with progressive neuromuscular disorder or spinal cord

injury, and is ventilated using noninvasive positive pressure ventilation (NIPPV)
by mask or mouthpiece for at least 12 hours each day in order to avoid or delay
tracheostomy (requires medical review); or

3. Has a functioning tracheostomy:

(i) Requiring suctioning; and

(ii) Oxygen supplementation; and

(iii) Receiving nebulizer treatments or requiring the use of Cough Assist/ in-
exsufflator devices; and

(iv) In addition, at least one subitem from each of the following items (I and
II) must be met:

(I) Medication:

I. Receiving medication via a gastronomy tube (G-tube); or

II. Receiving medication via a Peripherally Inserted Central

Catheter (PICC) line or central port; and

(II) Nutrition:

I. Receiving bolus or continuous feedings via a permanent

access such as a G-tube, Mickey Button, or
Gastrojejunostomy tube (G-J tube; or

II. Receiving total parenteral nutrition.

Tenn. Comp. R. & Regs. 1200-13-13-.01(104)(c). For any other patient, like Plaintiffs Alison

and Tristen, whose medical need for such services is equally acute but happens to be based on

other diagnoses or conditions, the rule denies coverage.

30. TennCare operates a special program called Employment and Community First

(ECF) CHOICES to provide home and community-based long-term supports and services for

individuals with intellectual and developmental disabilities. ECF CHOICES provides home

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health and private duty nursing services to some enrollees who are determined to need these

services, but the amount of these services available are limited by an annual expenditure cap.

The expenditure cap is based on an individual’s assessed level of needs as defined in TennCare

rules. Individuals assessed to have a low or moderate level have an expenditure cap of $45,000

per year. Individuals assessed to have a higher level of need have an expenditure cap of $60,000

per year. Tenn. Comp. R. & Regs. 1200-13-01-.31 (4)(d)(1).

31. TennCare may grant an exception to the expenditure cap for individuals assessed

to have exceptional medical needs. The annual expenditure cap for individuals granted an

exception is based on the average annualized cost of a comparable level of care in an institution.

For individuals with developmental disabilities, the annual expenditure cap is based on the

average annualized cost of nursing facility services plus the average annualized cost of

specialized services that a person with a developmental disability would be expected to need in a

nursing facility. Tenn. Comp. R. & Regs. 1200-13-01-.31(4)(d)(1)(iii).

32. “Inpatient hospital services” are mandatory services under the Medicaid Act. 42

U.S.C. § 1396d(a)(1); 42 C.F.R. § 440.10. TennCare covers such services as medically

necessary, without numerical limit. Tenn. Comp. R. & Regs. 1200-13-13-.04(1)(b)(12).

F. FACTUAL ALLEGATIONS

I. ALISON ROAN

33. Alison Roan lives at home with her parents and younger sister. Alison’s mother

works full-time providing care for adults with intellectual disabilities at a non-profit in

Murfreesboro, Tennessee. Her father works 60 hours per week as a truck driver.

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 34. Alison has suffered from serious chronic medical conditions and developmental

disabilities since birth. During her birth, Alison went into respiratory distress and was placed in

the Neonatal Intensive Care Unit at Vanderbilt Children’s Hospital, where she would remain for

the first three weeks of her life. She suffered her first seizure when she was only 36 hours old

and those have continued to the present. Alison suffered brain damage, and she was diagnosed

with cerebral palsy at three months old. At eleven months old, she was diagnosed with failure to

thrive.

35. In addition to cerebral palsy, Alison suffers from both restrictive and reactive lung

disease and impaired innate airway clearance. These disorders increase her risk of respiratory

and inflammatory reaction to illness, restrict her lung capacity, and make it difficult to manage

her mucus secretions. Additionally, Alison is unable to adequately clear her airway by coughing

due to low muscle tone caused by cerebral palsy. She is therefore constantly at risk of life-

threatening respiratory distress. She requires daily airway clearance therapies and regular

suctioning of mucus secretions, as well as oxygen therapy. Even with these therapies, she

requires constant monitoring as her condition can change drastically minute-by-minute. She

sometimes expectorates large mucus plugs which obstruct her airway requiring immediate

medical intervention. She is at heightened risk while sleeping due to sleep apnea.

36. Alison also has Lennox-Gastaut Syndrome, a type of epilepsy with multiple types

of seizures. She takes seizure medication and has been implanted with a vagus nerve stimulator

to help control her seizure activity, but she still suffers from some form of seizure activity every

day. Her seizures can be triggered by the touch of a hand or the switch of a light. When Alison’s

has a seizure, someone must be present to position her head so her airway is not blocked off.

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 37. She also suffers from severe spasms caused by her cerebral palsy. When her

spasms are especially strong, she moves her hand forcefully to her chin, cheek or chest bone

which can result in fracture if someone is not present to intervene.

38. Alison has had multiple orthopedic surgeries. At eleven months old, she

underwent surgery for a Nissen fundoplication, a procedure that wrapped her stomach around her

esophagus to treat the reflux of gastric acid. At five years old, she went into precocious puberty

which caused both of her hip bones to be pulled out of socket and required hip surgery. Alison

has diminished lung capacity due to her severe scoliosis. The severity of her scoliosis required

full spinal fusion surgery when she was eleven years old. She contracted a strain of MRSA

during that surgery and underwent two additional surgeries to kill the infection and save her life.

39. Alison is unable to take food, liquids or medication by mouth due to a delay in her

swallow mechanism. At eleven months old, a gastronomy tube was implanted which enables her

to receive nutrition and medications directly to her stomach. She is at a high risk of aspiration

and has been hospitalized three times this year due to bacterial and viral aspiration pneumonia.

40. Alison is highly susceptible to infectious diseases and has been rendered home-

bound since elementary school and is periodically required to be quarantined in her room away

from her family.

41. Alison currently receives 24/7 private duty nursing care paid for by TennCare.

For more than a decade, TennCare and its managed care contractor have continually found such

care medically necessary for Alison.

42. Alison turned 21 in early October, 2017. On October 5, 2017, TennCare and its

managed care contractor notified Alison that her 24/7 private duty nursing would not be covered

after October 31, 2017.

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 43. Appeals were filed on October 13, 2017, November 1, 2017 and November 9,

2017 to appeal TennCare’s decision to no longer provide 24/7 private duty nursing care for

Alison. As a result of these appeals, TennCare provided Alison with Continuation of Benefits

(“COB”) pending the results of her appeal. On December 1, 2017, TennCare summarily

dismissed her appeals. [Attachment A to this Complaint.] The parties’ counsel have negotiated

an agreement to maintain current coverage pending the filing of this complaint and a hearing on

the Plaintiff’s motion for a preliminary injunction.

44. In April 2017, in anticipation of her turning 21, Alison’s parents had begun

working with her TennCare MCO to come up with a plan of care with services provided through

the ECF CHOICES program. On November 30, 2017, a coordinator for the ECF CHOICES

Program, acting on behalf of the TennCare program, completed a proposed plan of care, known

as an ECF CHOICES Person Centered Support Plan (PCSP). The plan, a copy of which was

given to Alison’s parents, is Attachment B to this Complaint.

45. The PCSP noted that she was then receiving 24/7 nursing care at home and

documented the need for such care:

Alison should be treated with respect and dignity. Supporters should be aware that Alison
is aware of everything around her. She understands what’s going on around her in her
environment. Due to her visual impairment and seizure disorder it is important that she
knows everything that is going to happen before it happens. Let Alison know you are
going to touch her, change her, use a wipe, or apply medications. Alison should be
suctioned when she coughs so she doesn’t aspirate on her saliva. If she has a plug, her
oxygen saturation can drop quickly and she can experience respiratory distress quickly. It
is important to get the plug up and suctioned quickly. She receives respiratory treatments
every 4 hours. She receives cough assists as needed to help her lungs expand and
contract. Changes in the weather will bring on sickness for Alison. She had aspiration
pneumonia two times this year. Alison may be fine and then suddenly goes into
respiratory distress. Alison has seasonal allergies, the drainage will cause Alison to
choke. The fluid will go into Alison’s lungs and cause a respiratory crisis. Alison will
need frequent suctioning. Alison must be closely monitored. Alison’s oxygen is checked
1x a hour when sick. If she doesn’t urinate in 8 hours, she will need to be catheterized.
Alison usually receives catheterization 1x a week. She has frequent [urinary tract

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 infections]. She gets breathing treatments twice a day and as needed. She has rods in her
back and so when she is transported her back must be kept straight. If Alison starts to
whine or fuss, talking to her will help determine what is wrong. When she grimaces or is
fussy, she needs attention. It could be positioning, a wet diaper, cramps, bowel, menstrual
symptoms, etc. She has seizures daily and VNS must be applied when in a prolonged
seizure. She will sometimes get her arm or leg stuck in the railing of bed when she
seizures. Alison’s head also goes over to the right side, restricting her airway. Alison
must be monitored for pressure sores. She is repositioned every 2 hours. Alison must be
monitored around the clock including sleeping hours. …

[Attachment B to this Complaint.]

46. TennCare’s PCSP explains in poignant detail that, despite her severe medical

problems, her constant pain and discomfort, and the limitations that they impose, Alison Roan is

a remarkable person whose life is filled with loving, and being loved by, her family, caregivers

and friends:

Alison is sweet and kind. She has a wonderful loving personality. She has an infectious
laugh. She has spark, sass and humor. She likes jokes and music. She likes having books
read to her. She likes to have her hair and nails done. She likes to cuddle… Alison is
aware of her surroundings and she listens to everything. …Alison’s family, nurses,
teachers, therapists and friends are important to her. She wants to be included in
conversations. She will blink to answer yes and no [to] questions or use simple arm
movements. …If she is upset or hurting, … she will answer yes when asked the correct
question. It’s important to Alison to be included in activities. Alison picks up on others’
moods if they are frazzled or upset. It will cause her anxiety or stress if someone is in a
bad mood. It is important to Alison to always know someone is with her and she is not
alone. She needs to feel loved, cared for, and important…

Id.

47. The intimate social relationships that Alison is able to maintain in her home, and

that are documented in TennCare’s PCSP, are important to her health as well as emotional

wellbeing. These close relationships enable her nurses, who have been her longtime caregivers,

to detect medical problems early based on Alison’s behavior and emotions.

48. On December 2, 2017, Alison’s day shift nurse was reassigned to another case

and Alison’s family did not receive notice. As a result, Alison did not receive skilled nursing

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care that day. On December 3, 2017, Alison went into respiratory distress and was rushed to her

local hospital by ambulance and placed in the Intensive Care Unit. The following day, she was

transferred to Vanderbilt Children’s Hospital because of their specialized resources and that

hospital’s lengthy experience caring for her and was discharged on December 8.

49. According to Alison’s attending pulmonologist, referring to Alison’s private duty

nursing as “home health nursing:”

The acuity of Alison’s home care requires 24 hour a day nurse coverage. The home care
she receives would be equivalent to hospital intensive care unit care with 1 to 1 nursing
support. A nursing facility or a caregiver without a nursing background cannot provide
the medical care she needs within the home to prevent adverse events or the need for
hospitalizations. The family is not medically trained and while they provide for Alison’s
care regularly, they are not trained to provide more emergent treatment. Without home
health nursing, an event of mucus plugging or other respiratory complication would result
in respiratory failure and death for Alison before emergency personnel could respond to a
911 call to the house. Decreasing her home health nursing hours will significantly
increase her risk for morbidity and mortality and increase hospitalizations, and therefore
24 hours nursing is medically necessary to care for Alison.

[Declaration of Dr. Rebekah F. Brown, December 15, 2017, Attachment C to this Complaint].

50. The TennCare PCSP offered to Alison’s parents nonetheless limits the amount of

nursing care she can receive in the home to 19 hours per day. On December 14, 2017,

Defendants’ counsel informed Plaintiffs’ counsel that, based on TennCare rules, Alison would

not be allowed to exceed that level of care if she remains in a non-institutional setting.

II. TRISTEN SHACKELFORD

51. Tristen Shackelford lives at home with his mother and his mother’s boyfriend.

Both Tristen’s mother and his mother’s boyfriend work fulltime. Tristen’s mother works at the

Nashville Area Chamber of Commerce. Tristen’s mother’s boyfriend works as a security system

installer.

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 52. Tristen has suffered from serious chronic medical conditions and developmental

disabilities since birth. Tristen was born five weeks premature via an emergency caesarian

section. When Tristen was 72 hours old, his organs started to fail and he lost his hearing in his

right ear. He spent two weeks in the St. Thomas Hospital Neonatal Intensive Care Unit. Later,

doctors discovered that Tristen was born with congenital cytomegalovirus (“CMV”). CMV is an

infection that is transmitted in the prenatal period and can cause serious congenital abnormalities.

53. As a result of the CMV, Tristen suffered brain damage and was diagnosed with

cerebral palsy at six months old. Tristen was also diagnosed with a seizure disorder at six months

old. Tristen’s seizures are controlled with medication. However, he can still experience a seizure

if he vomits up some of his anti-seizure medication. He has been diagnosed with failure to thrive

since birth. Tristen has also been diagnosed with scoliosis and developmental delays. His muscle

tone has gotten progressively worse since birth.

54. In addition to cerebral palsy, Tristen suffers from impaired innate airway

clearance. This makes it difficult for Tristen to process his mucus secretions. Tristen is unable to

adequately clear his airway due to low muscle tone caused by cerebral palsy. He requires

frequent airway clearance therapies and regular suctioning of mucus secretions. Even though a

nurse performs these therapies 24/7, Tristen still requires constant monitoring as his airway could

be plugged by mucus at any second. When this happens, he needs immediate medical

intervention: “I can tell that Tristen needs to be suctioned when he coughs or makes a wheezing

sound. When I hear the cough or wheeze sound, I have to suction him within seconds to prevent

him from aspirating, choking and/or hypoxia. Also, I cannot suction him for more than 10

seconds at a time as to not cause atelectasis and/or hypoxia which could lead all the way to

death. That is why this is a skilled nursing procedure.” [Affidavit of Barbara McBride, January

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17, 2018, Attachment E to this Complaint]. Tristen is at heightened risk of a mucus plug and

resulting aspiration when he is asleep due to sleep apnea and when he is sick due to increased

mucus production.

55. Tristen has had multiple orthopedic surgeries. At three years old, Tristen

underwent Nissen fundoplication surgery, a procedure that wrapped his stomach around his

esophagus to treat the reflux of gastric acid. At eleven years old, Tristen went through puberty

and one of his hip bones was dislocated and he had subluxation in the other hip. This condition

required hip surgery. Hardware and screws were implanted to keep his hips in place. When

Tristen was sixteen years old, he had to have two rods put in his back due to his scoliosis and

inability to straighten his spine.

56. Tristen has had a stage 3 decubitus ulcer for over a year now. This ulcer is an

open wound on his back that is 4 mm in depth. This ulcer is located at the top of his diaper line

and there is a high risk of urine or feces getting into the wound and causing an infection. This

ulcer requires skilled nursing care to clean and pack the wound.

57. Tristen is unable to take food, liquids, or medication by mouth due to risk of

aspiration. When Tristen was three years old, a gastronomy tube was implanted which enables

him to receive nutrition and medications directly to his stomach. Tristen experiences a lot of

discharge from his gastronomy tube. This discharge can include stomach bile, which eats away at

his skin surrounding the tube. Tristen’s nurses must constantly check to make sure his

gastronomy tube site is clean and dry.

58. Tristen’s nurses must also check his gastric residual levels. Gastric residual refers

to the volume of fluid remaining in Tristen’s stomach while he is being fed via gastronomy tube.

Tristen’s nurses must extract liquid and air out of Tristen’s stomach. If excess air and liquid

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build up in Tristen’s stomach, he could vomit. If he vomits, he needs to suctioned within seconds

so that he does not aspirate and die.

59. Tristen has been hospitalized at least ten times over the course of his lifetime, in

addition to the hospitalizations for his surgeries. He has been hospitalized for pancreatitis and

superior mesenteric artery syndrome, which is when part of the small intestine is compressed

between two arteries. He was hospitalized for seizures when he was younger.

60. Despite these challenges, Tristen is a personable and engaged young man. He

enjoys being with people he knows, like his mother and his regular nurses. [Affidavit of Barbara

McBride, RN, January 17, 2018, Attachment E to the Complaint]. He understands slapstick

humor and laughs at television shows. Id. He can pick out his clothing for the day using the gaze

of his eye or by touching the item he would like to wear. Id. When his muscles don’t cooperate

and he accidentally touches the wrong piece of clothing, he can indicate the mistake with a

negative sound. Id. Tristen attends Harris-Hillman School, a Metro Nashville Public School for

children with disabilities. Tristen’s nurse attends school with him.

61. Tristen started receiving skilled nursing care when he was nine years old.

Tristen’s pediatrician requested 24/7 nursing care in fall 2012. He has received 24/7 private duty

nursing care at home ever since that time. Tristen’s doctor states the skilled nursing care Tristen

receives 24/7 is medically necessary and “needed to prevent significant medical complications

including death.” [Affidavit of Dr. Michael Miller, January 18, 2018, Attachment D to this

Complaint]. Tristen’s doctor also states there is an “unacceptable medical risk” if Tristen is

forced to leave his home to get 24/7 care. Id.

62. Before Tristen was approved for 24/7 private duty nursing care at sixteen, there

were several life-threatening situations that occurred overnight when he was without a nurse. In

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one instance, the day nurse came in at 6:00 am to find Tristen covered in dried vomit. He had

vomited during the middle of the night and his mother had not heard him and woken up. If he

would have breathed in the vomit, he could have aspirated and died. [Affidavit of Lucinda

Maxwell, LPN, January 10, 2018, Attachment F to this Complaint]. Even with 24/7 private duty

nursing, his nurses must watch him at every second: “There have been times when I was caring

for Tristen, turned my back, and he had turned blue in the time it took me to walk from his bed to

a chair two feet away because his airway was blocked. I had to suction him within seconds so he

started breathing again and his color returned to normal.” Id.

63. On December 28, 2017, TennCare sent Tristen a notice that stated that TennCare

would no longer pay for 24/7 private duty nursing care because TennCare rules say the amount

of care he asked for is not covered for anyone age 21 or older on TennCare.

64. The notice also stated that if Tristen’s doctor ordered it, the TennCare Managed

Care Organization, BlueCare, will pay for home health skilled nursing care 30 hours each week

and home health aide care for 10 hours each week. The notice stated that Tristen’s 24/7 nursing

would end on January 7, 2018. Tristen received the notice on January 2, 2018.

65. Tristen filed an appeal on January 3, 2018, and timely requested his benefits to

continue while the appeal was pending.

66. On January 5, 2018, a caseworker from TennCare’s home health agency informed

Tristen’s mother that she had called TennCare to find out whether they should staff nurses

throughout the weekend, and TennCare told the caseworker that they would not be providing

continuation of 24/7 nursing services. TennCare counsel agreed to provide continuation of 24/7

nursing services to Tristen until February 28, 2018, pending review of his eligibility for services

under ECF CHOICES.

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 67. In 2017, in anticipation of turning 21 later that year, Tristen’s mother had applied

for the ECF CHOICES program. Tristen was approved for the program, but because he was

receiving 24/7 skilled nursing care from TennCare, he did not need to utilize the nursing services

under ECF CHOICES.

68. On January 8, 2018, a coordinator for ECF CHOICES, acting on behalf of

TennCare, assessed Tristen for services. The coordinator has told Tristen’s mother that Tristen

has been approved for $167,000.00 in services under ECF CHOICES. The caseworker told

Tristen’s mother that the maximum TennCare would pay for nursing services was $20.00 per

hour, which equals $22.19 with tax. If what the caseworker said is true, and Tristen has been

approved for $167,000.00 in services, this equals approximately 20.4 hours of care per day under

ECF CHOICES.

69. Tristen has not been issued a proposed plan of care, known as an ECF CHOICES

Person Center Support Plan (PSSP) to date.

G. CLAIMS FOR RELIEF

70. Plaintiffs are “qualified individual[s] with a disability” as defined in 42 U.S.C.

§ 12131(2). They are individuals with disabilities whom meet the essential eligibility

requirements for the TennCare program with reasonable modification to the rules, policies, and

practices of that program.

71. Defendants’ agency, DFA, including its program the Bureau of TennCare, is a

“public entity” for the purposes of Title II of the Americans with Disabilities Act (ADA) of

1990, 42 U.S.C. § 12131(1)(B), and the federal regulations promulgated thereunder.

72. Title II of the ADA provides that no qualified individual with a disability shall, by

reason of such disability, be excluded from participation in or be denied the benefits of the

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services, programs, or activities of a public entity, or be subjected to discrimination by such an

entity. 42 U.S.C. § 12132; 28 C.F.R. § 35.130.

73. Without reasonable modification of the rules, policies, and procedures governing

the TennCare program, Plaintiffs will be forced to leave their family homes and enter restrictive,

segregated institutional settings against the will of Alison and Tristen and their families. .

74. Defendants’ refusal to provide Medicaid funding for around-the-clock private

duty nursing services that Plaintiffs require to avoid segregation in an institution and remain in

the integrated home setting constitutes unlawful discrimination in violation of Title II of the

ADA, 42 U.S.C. § 12132, and its implementing regulation, 28 C.F.R. § 130.51(d).

75. Defendants have utilized criteria or other methods of administration that have the

effect of subjecting Plaintiffs to discrimination on the basis of disability, including unnecessary

institutionalization, by failing to assess properly the services and supports that would enable

Plaintiffs to remain in their family homes and by failing to ensure that they have access to

Medicaid-covered services that will meet their needs in an integrated home setting, in violation

of Title II of the ADA and its implementing regulations.

PRAYER FOR RELIEF

WHEREFORE, Plaintiffs, Alison Roan and Tristen Shackelford, respectfully request that

this Court grant the following relief:

A. Assume jurisdiction over this action;

B. Declare that Defendants, acting under color of state law, are violating Plaintiffs’ rights

under Title II of the Americans with Disabilities Act, 42 U.S.C. § 12131 et seq.;

C. Preliminarily and permanently enjoin Defendants from reducing Plaintiffs home-based

nursing services below 24 hours per day, 7 days per week for as long as they remain

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 eligible for TennCare Medicaid benefits and those services remain medically

necessary;

D. Award reasonable attorneys’ fees and costs as provided by 29 U.S.C. § 794a(b) and 42

U.S.C. §§ 1988 and 12133; and

E. Order such further or additional relief as the Court deems equitable, just and proper.

DATED this 25th day of January, 2018. Respectfully submitted,

/s/ Christopher E. Coleman
Christopher E. Coleman TN BPR 24950
Gordon Bonnyman, Jr. TN BPR 2419
Kinika Young TN BPR 25777
TENNESSEE JUSTICE CENTER
211 7th Avenue, N., Ste. 100
Nashville, Tennessee 37219
Phone: (615) 255-0331
FAX: (615) 255-0354

Counsel for Plaintiff Alison Roan

/s/ David Kozlowski

David Kozlowski, TN BPR 3873
Emma W. Sholl, TN BPR 33540
Allison E. Jones, TN BPR 34754
LEGAL AID SOCIETY OF MIDDLE
TENNESSEE AND THE CUMBERLANDS
300 Deaderick Street
Nashville, Tennessee 37201
Phone: (615) 780-7119
FAX: (615) 244-4920

Counsel for Plaintiff Tristen Shackelford

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