A Plan to Better Accommodate Individuals with Osteosarcoma-Related Amputations into Society Candice Shadgoo, Boston University

Disability, Advocacy, and Medical Law - December 17, 2015

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Table of Contents

I. Introduction …………………………………………………………………………… 3

II. Objectives

I. Objective 1 …………………………………………………………………………. 4

II. Objective 2 …………………………………………………………………………. 5

III. Objective 3 …………………………………………………………………………. 5

IV. Objective 4 …………………………………………………………………………. 6

III. Legal Aspects ………………………………………………………………………….. 8

I. Introduction…………………………………………………………………………8

II. HIPAA ………………………………………………………………………………8

III. IDEA …………………………………………………………………………………9

IV. ADA…………………………………………………………………………………..10

V. Rehabilitation Act……………………………………………………………………11

VI. Olmstead Decision…………………………………………………………………….12

VII. Final Thoughts ………………………………………………………………………12

IV. Service, political, and fiscal factors……………………………………………………..13

I. Service …………………………………………………………………………………13

II. Political ………………………………………………………………………………..13

III. Fiscal …………………………………………………………………………………..14

V. Works Cited ………………………………………………………………………………..15

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Introduction

Cancer is never a welcome diagnosis, and amputations resulting from this disease have long

lasting consequences on both the physicality and emotional state of the patient. For adolescents,

amputations as a result of osteosarcoma can be especially difficult. Not only does the youth need to

regain health after dealing with a life-threatening illness, but also, he or she needs to learn to cope with

mobility and accommodation issues. As a physical therapy student at Boston University, I am

impressed by the struggle of adolescents recovering from osteosarcoma. As a physical therapist, I hope

to someday work with patients with amputations and help them adjust to their new prosthetic limbs.

Teenagers in general have body image and self-esteem issues, so I feel that helping young survivors of

cancer adjust and reintegrate into school and daily lives would be greatly rewarding.

The Dana Farber Cancer Institute in Boston, Massachusetts, is well known as a pioneer in cancer

treatments and resources. Currently, the cancer institute has numerous options to help teach patients,

families, and schoolmates about accommodations options and related issues. However, even the most

comprehensive program could use some changes. My proposal presents a comprehensive plan to

supplement the Dana Farber Cancer Institute’s current programs. By implementing my plan, I hope to

achieve my objectives: to identify how the Dana Farber Cancer Institute currently provides

accommodations, to identify which physical and occupational therapists work with insurance plans, to

teach patients how to use prosthetic limbs, and to help support child and peer challenges as they begin

to reintegrate into society with their new prosthetic device. This plan is expected to take at least a year,

beginning in January 2016. This plan also takes into account disability and accommodation laws, such

as: ADA, Olmstead Decision, IDEA, Rehabilitation Act, ACA, and HIPAA. Everyone deserves not

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only the best treatment, but the proper accommodations for their disability, and therefore, the goals of

my plan are to keep patients motivated even in the darkest of times, and to also work with the Dana

Farber Cancer Institute to advocate for the needs of young students ages twelve to eighteen with

osteosarcoma-related amputations as they interact with their peers.

Objectives of this Plan

Identify How Dana Farber Cancer Institute Currently Provides Accommodations

The Dana Farber Cancer Institute does a phenomenal job of helping cancer patients through their

tumultuous journey. Most goals require intensive planning in order to maximize efficiency and to

eliminate wasted resources and effort. Therefore, my first objective would be to identify how the Dana

Farber Cancer Institute currently provides accommodations for young students with cancer-related

disabilities. The expected length of this goal is approximately one week. I plan to contact the Dana

Farber Cancer Institute’s Head of Disability Services, specifically to speak to the heads of the Pediatric

Resource Program: Pamela White, Joe Chabot, and Lilliana Lopera-Jimenez. I expect that there will be

some possible privacy issues, especially with HIPAA. HIPAA, which stands for the Health Insurance

Portability and Accountability Act, is a privacy law that has specific conditions to protect people from

having their health information disclosed without their consent. However, my objective will not

transgress HIPAA’s conditions. In my objective, I plan to ask the individuals at the Pediatric Resource

Program if they can provide information or documents about how current patients are receiving

accommodations. I would also request that any names, addresses, or other means of identifying an

individual be removed, so that I can safely and legally access the necessary data.

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Identify Physical Therapy and Occupational Therapy Coverage of Prosthetics

My second objective is to identify physical and occupational therapy coverage of prosthetic

devices. This part of my plan is also expected to take one week, and therefore, should be finished by

the middle of January, 2016. This part of my plan will require me to speak with a diverse group of

insurance company representatives. I plan to contact the Dana Farber Cancer Institute as well as

insurance companies such as Blue Shield, Medicare, and Medicaid to compare coverage plans. I hope

to compile all the different options patients would have into a document to help the patient’s family

decide which plan works best for them financially. With a more simplified explanation of insurance

coverage, patients and their families can concentrate on recovery rather than worrying about confusing

terminology and insurance jargon. I plan to ask insurance companies to have consultants available to

help patients learn about coverage costs— one of the greatest challenges for patients and their families

is to identify how much coverage a patient receives from an insurance company when dealing with

amputation and prosthetic prices. I do not anticipate any legal issues for this objective since I will only

be asking general knowledge questions that should be available to anyone who makes inquiries.

Teach Patients How to Use Prosthetic Devices

Not only does a patient need to have resources to receive a prosthetic device, but he or she must

also learn how to use the device. My third objective is to teach patients how to use these prosthetic

limbs and accommodations following their amputation. I intend to implement this goal at the end of

January, and is expected to take at least until mid-April, 2016, to truly succeed. Of course, all physical

therapy and occupational therapy varies depending on the needs and progress of each patient. This

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would require me to be in contact with the patient’s physical and occupational therapists. Since the

physical and occupational therapists would be contacting and informing us on the patient’s progress

with the patient’s consent, there would be no violations of any privacy laws. It is recommended that

patients visit their physical and occupational therapists regularly to adjust to having a prosthetic limb

and to see quicker results. Therefore, I will provide consenting patients who have agreed to receive my

program’s information with a list of physical and occupational therapists that work for their insurance

companies. I will plan to encourage patients to attend their physical and occupational therapy

appointments regularly. Moreover, I will stay in contact with the patient’s family, physical and

occupational therapists as appropriate to see how much progress is being made by the patient and to

offer recommendations and support.

Supporting Child and Peer Challenges

My fourth and final objective is to help support these young patient through peer challenges. I

feel like these teenagers will be best served with a platform in which to anonymously express their

feelings and learn that they are not going through this alone. To that end, I believe that an anonymous

chat room using the Dana Farber Institute Servers would offer a balance of privacy and comfort for

these teenagers reintegrating into society. At the end of January 2016, I plan to search and put together

a team of web designers to discuss building a chatroom. Ideally, this chatroom would be a hybrid of

two popular social media platforms, Facebook and AOL Instant Messaging. This would allow patients

to either select to privately chat with other patients who are online, or allow them to post on a wall

where everyone who has access to the chatroom can see, like, and comment on their post. Moreover,

these teenagers will be assigned either a number or an emoticon to help hide their identities. Thus, this

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chatroom will be HIPAA-compliant. Additionally, I plan for this chatroom to be funded by donations,

which will be solicited on a separate portion of the website.

In addition to building the chatroom, my plan covers training moderators for the chatroom and

assuring patient safety. I plan to create a handbook and course that will teach moderators about HIPAA

guidelines as well as red flags for depression, suicide, and other personal issues a patient may face.

Each patient who signs up for the chatroom will sign a waiver that allows the moderator to contact a

doctor should a patient post anything alarming in the chatroom— however, the moderator will still not

be aware of the patient’s identity. The only individuals who are aware of the patient’s identity are the

doctors and the patient him/herself. I estimate that the formation of the chatroom take three months,

and that the active use of it take one week. In this way, I expect to launch the chatroom successfully by

the beginning of May, 2016.

At the same time, I intend to facilitate a student’s return to his or her school, working hand-in-

hand with Dana Farber’s heads of the Pediatric Resource Program (Pamela White, Joe Chabot, Lilliana

Lopera-Jimenez), the Just for Teens specialists (Jen Noonan and Heather Strauss), as well as the heads

of the Back to School Program (Kendal Temple and Lisa Scherber). With the student and parent’s

permission, I would accompany them to the school and ensure that the school is ADA-compliant and

that the student feels comfortable in his or her learning environment. I would speak to school

counselors and offer suggestions for the school to help educate students and teachers on amputations,

and I would also sit down with school teachers, the patient, and his or her parents to create an IEP,

which is an individualized educational program. This ensures that the student has everything that he or

she needs to have a full and positive educational and social experience, despite having a disability.

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Legal Aspects of This Plan

Introduction

Any proposal dealing with disabilities needs to take into account the specific legislation meant to

provide people with disabilities with privacy, resources, accommodation, and the right to a community

life. My proposal will take into account: HIPAA, ADA, IDEA, the Rehabilitation Act, and the

Olmstead Decision.

HIPAA

HIPAA stands for the Health Insurance Portability and Accountability Act and was enacted in

1996. HIPAA is a privacy law that has specific conditions to protect patients from having their health

information and medical records disclosed without their consent; it covers conditions in which

individuals may have their information revealed. In order to work within HIPAA’s boundaries, I have

to ensure that I do not violate any privacy and confidentiality issues. This is why every aspect of the

plan revolves around anonymous information, unless patients have previously given consent.

Furthermore, my plan for marketing information via a chatroom for patient health will be covered by

HIPAA because it will be anonymous. Moreover, the chatroom will provide care coordination, case

management, and recommend alternative treatments, all of which are covered by HIPAA (45 CFR

164.501, 164.508 (a)(3)). This section of HIPAA involves the legality of disclosing protected health

information to management, accreditation, or financial services by organized health care (HHS.gov).

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Since none of the marketing involves the sale of protected health information, it is also covered by

HIPAA.

IDEA

My plan also takes into account IDEA, the Individuals with Disabilities Education Act, which

was passed in 1975 and ensures that children with disabilities can get a free and appropriate education.

My plan is meant to further the goals of the IDEA by helping facilitate parents and students’

knowledge of the specifics of the act and of all their rights and resources. To this end, it is important

for me to explain to parents and patients section 614 of the IDEA, which mentions evaluations,

eligibility determinations, individualized education programs (IEPs), and educational placements. In

fact, subsections E and G of part B of the IDEA need to be presented to parents and patients in a clear

and easily comprehensible way, allowing them to understand their options and to take advantage of the

resources. For example, under subsection E, parents will learn about their procedural safeguards. They

have the right to go to school meetings; this also informs parents on what forms to fill out, hearing

rights, eligibility, and many other rights. In the same way, familiarity with subsection G will allow

parents to know what financial resources they can receive as an allotment from the government and

will explain to them how funds are distributed. My plan will help parents navigate through the tricky

minefield of grants and funds, and if the state does not have enough money, then we we will help

parents find alternative sources of funding.

It is very important when dealing with patients to make sure they are comfortable and fully

knowledgeable about IEPs, eligibility, evaluation, and education placement. An individualized

education plan helps students work within the system to get the accommodations they need to succeed.

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When dealing with government and education, it is important to ensure that students’ paperwork is

filled out properly so that all learning opportunities gain credit. This includes learning while still a

patient in the hospital as well as reintegration into the school system. For example, it will be important

for these students with cancer-related amputations to have specialized physical education courses to

see that they can still take part in physical activities and competitive sports. Team sports offer students

more than just exercise, but also community building, leadership, communication, and problem-

solving schools, and thus it is essential for these students with cancer-related amputations have

alternatives, which allow them to have a full school experience. Students with osteosarcoma-related

amputations will most likely not have issues being covered by disability legislation. However,

amputations cover a wide range of surgery options, and therefore, it is important to make sure that

adolescent patients with all sorts of amputations have an understanding of which resources they can

use. To this end, my goal is to help patients and families understand the evaluation and placement

process, and also, to realize that these evaluations and placements are not finite, but may be reviewed

and altered as the student’s health situation changes.

ADA

While my plan specifically revolves around HIPAA and the IDEA as it deals with children in a

confidential setting, the proposal also falls under the American Disabilities Act. This act was enacted in

1990 and prohibits discrimination, ensures equal opportunities for individuals with disabilities, and

promotes community integration. In fact, under section 36.203, the ADA demonstrates that public

accommodation must be in the integrated setting to allow for opportunities to participate, which

applies to schools as well. Schools require integration; students must feel comfortable and integrated in

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their school setting. All classrooms and facilities at the school should have the necessary

accommodations, such as ramps and desks, to accommodate for all disabilities. The ADA legislation is

meant to ensure that students do not experience segregation due to their disabilities. In many cases,

legislation is not enough— it is important to have someone check that laws are being enforced. My

proposal intends to help parents and patients make sure that their rights under the ADA are being met

and to help open channels of communication and explain to parents who to notify if the school setting

is non-ADA compliant in any way.

Rehabilitation Act Section 504

Adolescents with amputations resulting from osteosarcoma are also covered by the

Rehabilitation Act of 1973, specifically Section 504. Section 504 protects qualified individuals from

discrimination based on their disability. Any organization that receives money from a United States

federal department or agency is forbidden from preventing individuals with disabilities from equal

opportunities and services. Since most public schools receive federal government funds, they, as well

as hospitals and other health care organizations, fall under Section 504 of the Rehabilitation Act.

Therefore, I would make sure that the chatroom properly provides information about the government

hotlines and websites to file a report about anyone who is non-compliant with Section 504. The law

demands reasonable accommodations. It is important for teenagers with osteosarcoma-related

amputations to be knowledgeable about these laws and to have access to hotlines, not only for

education, but also for current and future work opportunities. Often, teenagers choose to use the end of

high school as a time to enter the workforce or to gain internships. Section 504 of the Rehabilitation

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Act ensures that qualified individuals with disabilities will not be discriminated against in the

workforce.

The Olmstead Decision

All this legislation has the specific purpose of reintegrating an individual with a disability into

the community. Therefore, my proposal must deal with the Supreme Court’s ruling on the Olmstead

Decision, which ultimately decided that not only does institutionalization diminish an individual’s

everyday life, but also that public organizations and communities must provide services for people

with disabilities in order to reintegrate them into the community. The ruling in the Olmstead case

intended to eliminate unwarranted segregation based on disabilities. Many patients currently in

hospitals may find it difficult reintegrating into the community. Ideally, the anonymous chatroom will

not only share stories of accommodation-friendly settings, but also make individuals with disabilities

of the right channels for complaining, such as contacting the U.S. Department of Justice Civil Rights

Division.

Final Thoughts on Legal Issues

As with most legal issues, there is a strong precedent for individuals with osteosarcoma-related

amputations to get the accommodations to be fully-integrated within the community. My goal is to

work within this legislation to make sure that patients and their families are able to access all the

opportunities necessary, and thus enjoy a speedy and happy recovery. Both in the chatroom and by

meeting with consenting patients and their families, I will try to explain and facilitate how HIPAA,

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IDEA, ADA, the Rehabilitation Act, and the Olmstead Decision apply and give them the appropriate

recourse for any legal problems that might develop.

Service, Political, and Fiscal Factors of this Plan

Service Factors

My plan depends both on volunteers and hired professionals. Even though volunteers would be

donating their time and resources, they still need to be professional. Therefore, my proposal includes

training for volunteer members of the chatroom on sensitivity, HIPAA, and security. It is possible that

students may wish to volunteer, and if so, my plan should allow for them to receive community service

credit if possible at their academic institutions. The most rigorous standards will be applied in order to

keep the volunteers acting on the most professional level. We will advertise through schools, religious

institutes, charitable organizations, and the Dana Farber Cancer Institute in order to acquire appropriate

volunteers. Moreover, we would administer full CORI and SORI background checks to ensure that

they have not violated any state or federal laws.

Political Factors

My proposal is feasible regardless of a potential of anyone’s political affiliation. The only true

demand is that we comply with already established laws and acts such as HIPAA, IDEA, ADA, the

Rehabilitation Act, and the Olmstead Decision. At this stage, I do not anticipate having to lobby for

any particular rights, nor do I expect there to be any problems. We will happily accept resources from

anyone who wishes to donate, regardless of their personal beliefs. At the same time, we will make sure

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that our chatroom remains a neutral territory and will not allow for political, religious, ethnic, or any

other types of slurs.

Fiscal Factors

As with any plan, success means gaining financial resources. We hope to fundraise on our

website at the beginning of January 2016 and to use those funds to help support a wide range of plans,

from paying for the creation and maintenance of the chatroom to helping to fund the promotional

literature and advertisements. Volunteers and donors will play a large role in the chatroom’s success.

By working with the Dana Farber Cancer Institute, I hope to take advantage of their current resources

while broadening them as well. Another huge fiscal issue revolves around parents finding alternative

methods of paying for amputations and prosthetics, which are very expensive and not covered by all

insurance companies. To that end, not only will we help parents find insurance plans that have a

broader range of coverage, but also, we will look for other grants and scholarships that might take care

of some of the costs for these families.

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U.S. Department Of Health And Human Service. U.S. Department of Health and Human

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