Spring 2013 journal

Spring 2013

Vol. XIII No. 1

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American Association of

Nurse Life Care Planners

Journal of Nurse Life Care Planning ®

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Topics in ®

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Motor and Developmental Disorders

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Journal of Nurse Life Care Planning

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JOURNAL OF NURSE LIFE CARE PLANNING

Spring 2013 Table of Contents 7

Balancing Work and Caregiving

13

Brachial Plexus Injury/Birth Trauma and Occult Language Disorder

Peter W. Rosenberger

Sally A. Asquith MS CCC-SLP

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Apps for Communication Carol A. Page PhD CCC-SLP ATP

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Motor Skills In Children Susan B. Jeter MS LPE

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Pediatric Life Care Plan Development: An Overview of IDEA and Section 504 Mariann Cosby MPA MSN RN PHN CEN NE-BC LNCC CLCP CCM MSCC Steven M. Cosby MS Ph.D ABSNP

Departments 2

Editor’s Note

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Information for Authors

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Contributors to this

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Issue Letters to the Editor

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Technology Corner

Journal of Nurse Life Care Planning is the official peer-reviewed publication of the American Association of Nurse Life Care Planners. Articles, statements, and opinions contained herein are those of the author(s) and are not necessarily the official policy of the AANLCP® or the editors, unless expressly stated as such. The Association reserves the right to accept, reject, or alter manuscripts or advertising material submitted for publication.

The Journal of Nurse Life Care Planning is published quarterly in Spring, Summer, Winter, and Fall. Members of AANLCP® receive the Journal subscription electronically as a membership benefit. Back issues are available in electronic (PDF) format on the association website. Journal contents are also indexed at the Cumulative Index of Nursing and Allied Health Literature (CINAHL) at ebscohost.com.

Please forward all email address changes to AANLCP® marked “Journal-Notice of Address Update.”

Contents and format copyright by the American Association of Nurse Life Care Planners. All rights reserved. For permission to reprint articles, graphics, or charts from this journal, please request to AANLCP® headed “JournalReprint Permissions” citing the volume number, article title, author and intended reprinting purpose.

Neither the Journal nor the Association guarantees, warrants, or endorses any product or service advertised in this publication nor do they guarantee any claims made by any product or service representative.

Wendie Howland MN RN-BC CRRN CCM CNLCP LNCP-C LNCC

AANLCP Journal of Nurse Life Care Planning

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In order to make safe and effective judgments using NANDA-I nursing diagnoses it is essential that nurses refer to the definitions and defining characteristics of the diagnoses listed in this work.

Other diagnoses may be relevant depending on patient needs.

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Editor’s Note Welcome to the Spring 2013 issue of the Journal of Nurse Life Care Planning. We are proud to have a preliminary study on a topic with very little in the published literature, from a recognized expert, on little-known consequences of brachial plexus injury in infants and children. We hope this will lead to further study. You will be sure to find it useful if you do these cases. Other articles offer opinion on continuing therapies, guidelines for normal milestones in child motor development, IEP/504 updates, augmented communication, a first-person voice on caregiving, and a passel of resources. Let us know what you think.

As I write this, about 20 people are preparing to travel to a small but excellent LCP conference to share ideas with colleagues from several disciplines. As nurses we welcome the opportunity to do so; the open and honest exchange of ideas enriches us all. We don’t need to declare that our work will result in any mandates for every planner. Indeed, as professional nurse life care planners, we are obligated to adhere to the American Nurses Association Scope and Standards of Practice and Ethical Standards in all our professional activities.

Nurses need no better guideline. The current AANLCP Scope and Standards of Practice and Ethical Standards are available on our website; feel free to refer them to clients or others who are unclear on where we stand.

Finally, I am also so pleased to be able to say that as of this writing the AANLCP Core Curriculum is due to go to the publisher on March 8. Over the years, so many people have dedicated time, toil, and even tears to this process. The editors have tried very hard to include every name in the acknowledgments. Even if your name doesn’t appear as an author in this edition, know that nevertheless your hard work furthered the process that brought this volume to press, and we are proud to let you know we are indebted to you for it.

American Association of Nurse Life Care Planners 3267 East 3300 South #309 Salt Lake City, UT 84109 Phone: 888-575-4047 Fax: 801-274-1535 Website: www.aanlcp.org Email: info@aanlcp.org 2013 AANLCP Executive Board President Joan Schofield BSN RN MBA CNLCP President Elect Nancy Zangmeister RN CRRN CCM CLCP CNLCP MSCC Treasurer Peggie Nielson RN CNLCP MSCC Secretary Shirley Daugherty RN CLCP MSCC LNC Past President Anne Sambucini RN CCM CDMS CNLCP MSC-C

The American Association of Nurse Life Care Planners

promotes the unique qualities the Registered Nurse delivers to the Life Care Planning process. We support education, research, and standards

related to the practice of

Nurse Life Care Planning.

Cordially, Wendie Howland Editor, Journal of Nurse Life Care Planning whowland@howlandhealthconsulting.com AANLCP Journal of Nurse Life Care Planning

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All authors must disclose any relationship with facilities, institutions, organizations, or companies mentioned in their work.

AANLCP® invites interested nurses and allied professionals to All accepted manuscripts are subject to editing, which may involve only minor changes of grammar, punctuation, paragraphsubmit article queries or manuscripts that educate and inform ing, etc. However, some editing may involve condensing or rethe Nurse Life Care Planner about current clinical practice methods, professional development, and the promotion of Nurse structuring the narrative. Authors will be notified of extensive Life Care Planning within the medical-legal community. Submit- editing. Authors will approve the final revision for submission.

The author, not the Journal, is responsible for the views and conted material must be original. Manuscripts and queries may be clusions of a published manuscript. addressed to the Editorial Committee. Authors should use the following guidelines for articles to be considered for publica- Submit your article as an email attachment, with document title tion. Please note capitalization of Nurse Life Care Plan, articlename.doc, e.g., wheelchairs.doc

Information for Authors

Planning, etc.

All manuscripts published become the property of the Jour-

Text nal. Manuscripts not published will be returned to the author.

Manuscript length: 1500 – 3000 words Queries may be addressed to the care of the Editor at : whowland@howlandhealthconsulting.com • Use Word© format (.doc, .docx) or Pages (.pages) • Submit only original manuscript not under consideration • • • • •

by other publications Put the title and page number in a header on each page (using the Header feature in Word) Set 1-inch margins Use Times, Times New Roman, or Ariel font, 12 point Place author name, contact information, and article title on a separate title page, so author name can be blinded for editorial review Use APA style (Publication Manual of the American Psychological Association)

Art, Figures, Links All photos, figures, and artwork should be in JPG or PDF format ( JPG preferred for photos). Line art should have a minimum resolution of 1000 dpi, halftone art (photos) a minimum of 300 dpi, and combination art (line/tone) a minimum of 500 dpi.

Each table, figure, photo, or art should be on a separate page, labeled to match its reference in text, with credits if needed (e.g., Table 1, Common nursing diagnoses in SCI; Figure 3, Time to endpoints by intervention, American Cancer Society, 2003) Live links are encouraged. Please include the full URL for each.

Manuscript Review Process Submitted articles are peer reviewed by Nurse Life Care Planners with diverse backgrounds in life care planning, case management, rehabilitation, and the nursing profession. Acceptance is based on manuscript content, originality, suitability for the intended audience, relevance to Nurse Life Care Planning, and quality of the submitted material. If you would like to review articles for this journal, please contact the Editor.

AANLCP® Journal Staff for this issue Wendie Howland MN RN-BC CRRN CCM CNLCP LNCP-C LNCC

Journal Editor Reviewers Barbara Bate RN CCM CNLCP LNCC MSCC Mariann Cosby MPA MSN RN PHN CEN NE-BC LNCC

Editing and Permissions

CLCP CCM MSCC

The author must accompany the submission with written release from: • Any recognizable identified facility or patient/client, for the use of their name or image • Any recognizable person in a photograph, for unrestricted use of the image • Any copyright holder, for copyrighted materials including illustrations, photographs, tables, etc.

CNLCP

Liz Holakiewicz BSN RN CCM CNLCP Linda Husted MPH RN CNLCP LNCC CCM CDMS CRC Kathy Pouch RN-BC MSN CCM CNLCP LNCC Joan Schofield BSN RN MBA CNLCP Victoria Powell RN CCM LNCC CNLCP MSCC CEAS Nancy Zangmeister RN CRRN CCM CLCP MSCC

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Contributing To this Issue Sally Asquith MS CCC-SLP (“Brachial Plexus Injury/Birth Trauma and Occult Language Disorder”) has had a circuitous route into the medical-legal arena. Her bachelor’s degree was in Japanese and Linguistics, with two years abroad in Tokyo. She discovered speech-language pathology, and attained an MS in Communication Disorders with a specialization in pediatric diagnostics. Her career spans home health, public school, county clinic, research at Duke University’s Child Development Unit, insurance appeal reviews, cleft lip & palate, and private practice. For over a decade, she has worked closely with life care planning teams as an expert witness in pediatric speech-language pathology. Ms. Aqsquith owns two private practices near Charleston, SC: Carolina Speech & Language Center, Inc., and Eat*Talk*Play, LLC. She is most interested in autism spectrum disorders, failure to thrive, feeding disorders, movement disorders, brachial plexus injury, apraxia of speech, bilingualism (English/Spanish), and cognitive deficits due to closed head injury.

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Mariann F. Cosby MPA MSN RN PHN CEN NE-BC LNCC CLCP CCM MSCC (“Pediatric Life Care Plan Development: An Overview of IDEA and Section 504”) is the owner of MFC Consulting in Northern California, providing legal nurse consulting, life care planning, medical cost projections, case management, and expert witness services. She has extensive experience in clinical, management, teaching and consulting positions in emergency nursing, pediatrics, geriatrics/public health and school nursing, currently consulting for California Correctional Health Care Services. She is currently President Elect for Northern Section of the California School Nurses Organization and is a Director at Large for the Greater Sacramento Area of the American Association of Legal Nurse Consultants.

Steven M. Cosby, M.S; Ph.D; Diplomate A.B.S.N.P; C.H.T (“Pediatric Life Care Plan Development: An Overview of IDEA and Section 504”)is an educator credentialed by the State of California in Administration, Psychology, Counseling, and Teaching multiple subjects. He earned Board Certifications in Hypnotherapy, Neurolinguistic Programming, A.B.H. and Diplomate in School Neuropsychology, A.B.S.N.P. He has been a special education teacher and school psychologist at elementary, intermediate, and secondary levels. He has served as an adjunct instructor at the Center for Psychological Studies, Berkeley. Now in semi-retirement, he continues to study the human condition, researches, writes, and consults.

Susan B. Jeter, MS, LPE (“Motor Skills in Children”) has BA in Psychology and an MS in Counseling Psychology. She is licensed as Psychological Examiner. Her career has included neuropsychological testing, individual and family counseling, and group education in developmental, psychoeducational, and neuropsychological settings. She is the owner of Educational Edge, specializing in psychoeducational testing, workshops, and inservices for parents and teachers on ADHD, psychoeducational testing, learning disabilities, and dyslexia. Her professional interests include identification of learning disabilities from kindergarten through college age students.

Carol A. Page PhD CCC-SLP ATP(“Apps for Communication”) is the Director of the South Carolina Assistive Technology Program (SCATP) at the USC School of Medicine, Center for Disability Resources, Department of Pediatrics. She has her assistive technology practitioner certificate from the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA). Carol provides trainings at a local, state and national level on assistive technology for persons with disabilities of all ages, their caregivers and professionals who serve them. Training topics include augmentative and alternative communication, software for reading comprehension and writing, computer access and a variety of other resources.

Carol recently co-authored the chapter Severe Communication Disorders in the Handbook of Children with Special Health Care Needs (Springer, 2012).

Peter W. Rosenberger (“Balancing Work and Caregiving”) is the author of WEAR COMFORTABLE SHOES -Surviving and Thriving as a Caregiver. Peter is the president of Standing With Hope, an evangelical prosthetic limb outreach founded by Peter and his wife, Gracie, www.standingwithhope.com. He has an extensive media, speaking, and writing history on chronic pain, disability, and caregiving. Drawing upon his vast experience as his wife’s caregiver through her catastrophic medical crisis of seventy-four operations, multiple amputations, fifty-five physicians, twelve hospitals, six insurance companies, and $9 million in health care costs, Peter extends the helping hand of one with experience to those buckling under the strain of caring for a vulnerable loved one.

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Keith Sofka (“Environmental Control Units, part 2”) is a principal of Caragonne and Associates, Ajijic, Jalisco, MX. He has practiced the provision of assistive technology services for the past 30 years. Mr. Sofka provides consultation to hundreds of companies, schools, Government Agencies and individuals. A major focus of Mr. Sofka’s work has been to provide recommendations for and implementation of school and workplace reasonable accommodation recommendations for individuals and organizations. This work typically includes housing and commercial building access as well as transportation, mobility and completion of daily living needs as well as modifications to the individual worksite. He has also taken training and practiced in other areas of assistive technology including custom seating and positioning for individuals with severe orthopedic involvement. His work has always been focused on ways to use technology to increase the independence of the individual.

Ajijic in spring Wendie Howland

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Letters to the Editor

Update on Organizing Your Life and Veterans I continue to work on projects to help individuals living with TBI and thought your readers might be interested in a new book I have just finished -- Organize Your Life Using Android Devices. The new book follows the structure of my previous iOS books, but addresses the native apps available on Android devices.

Although the VA may be providing iOS devices to wounded veterans, I understand that many veterans are bringing their own Android phones and/or devices into their therapy sessions. I hope this new book will help therapists assist veterans learn to use their Android devices as effective cognitive prosthetics. You can find information about the new book at http://id4theweb.com/android_book.php.

Michelle Ranae Wild Making Cognitive Connections http://id4theweb.com http://makingcognitiveconnections.com

Recognition for JNLCP I just noticed that the only recommendation on the back of the NANDA-I 2012-2014 is a quote from AANLP JNLCP….wow!

Barbara Bate RN-BC CCM CRRN CNLCP LNCC MSCC Holden, ME

CNLCP Addenda The name of Dawn Felice was inadvertently omitted from the list of recertifying CNLCPs in 2012 The name of Patricia Costantini was misspelled.

We regret the errors. Congratulations to these two nurses!

Call for Ethical Challenges The JNLCP for June 2013 will be on ethical topics in life care planning. We are collecting brief (2-3 paragraphs) vignettes that will illustrate challenges encountered by working nurse life care planners to be discussed by a panel of experts. These can be related to client behavior, inter- and intraprofessional relations, billing, or any other topics of concern. Let us know if and how you resolved yours, or if it is still unresolved.

All submissions will be kept strictly confidential and anonymous. Feel free to change any identifying details or ask that this be done as part of the editorial process. Please submit to the editor before March 15.

Letters on any topic are welcome and may be sent to the Editor at whowland@howlandhealthconsulting.com. Letters may be edited for brevity.

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Imagine that! How very flattering. Ed.

JNLCP Annual Readership Survey http://www.surveymonkey.com/ s/QN88JC9 Let us know what you think!

Opinions from all readers wanted!

Spring dogwood Liz Holakiewicz AANLCP Journal of Nurse Life Care Planning

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First Person

Balancing Work and Caregiving Peter Rosenberger, Standing with Hope According to a 2009 study

responsibilities while serving as caregivers. It re-

by the National Alliance for

vealed significantly higher costs to the employer

Caregiving in collaboration

for factors ranging from absenteeism to health care.

with AARP, approximately

These costs to American businesses soar into the

“73% of family caregivers who

billions. (The MetLife Study of Working Caregiv-

care for someone over the age

ers and Employer Health Care Costs, 2010)

of 18 either work or have worked while

In a robust economy, those costs and

providing care.” With 65 million

challenges to employers can be

Americans serving as volunteer caregivers for vulnerable loved ones, that percentage reflects a vast amount of today’s workforce saddled with the extra responsibilities of caregiving.

With Baby Boomers racing into senior status, tomorrow’s workforce will have to balance caring for a huge population of

“Approximately

absorbed or accommodated somewhat more easily. In the

47 million American difficult times facing today’s workers are serving as businesses, however, carevolunteer caregivers for givers must function with extra care to avoid taxing aging, disabled, or the goodwill of employers chronically-ill loved and coworkers as well as the ones.” “bottom line.”

aging parents. The alarm bells are

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Nurse life care planners recognize that the caregiver who provides daily pa-

sounding: A large number of individuals will need volunteer caregivers, and more and more workers will need to juggle their professional lives while caring for loved ones.

A 2010 MetLife study described American workers from every profession struggling to balance work

Peter Rosenberger is the president of Standing With Hope, an evangelical prosthetic limb outreach founded by Peter and his wife, Gracie, www.standingwithhope.com. He has an extensive media, speaking, and writing history on chronic pain, disability, and caregiving. Drawing upon his vast experience as his wife’s caregiver through her catastrophic medical crisis, Peter extends the helping hand of one with experience to those buckling under the strain of caring for a vulnerable loved one. He may be contacted at peter@standingwithhope.com

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tient care is a critical determinant of that individual’s

gling the medical crisis alone is challenging. Living

overall health. Although quantifying the exact value

up to work responsibilities, however, while some-

added by a caregiver can be challenging, all can

how keeping the plates spinning of picking up chil-

agree that a gainfully-employed caregiver is in the

dren, fixing meals, and swinging by the hospital to

patient’s best interest. Paychecks, housing, insur-

meet with doctors can make for some extra-stressful

ance, food: the entire care ecosystem for many indi-

workdays.

viduals depends upon the physical, emotional, and

When the caregiver is the business owner or boss,

professional health of the caregiver. Certainly not all

scheduling work may be easier, but the stress of

of a nurse life care planner’s clients have family

keeping the business going brings additional chal-

members or friends serving as caregivers; and

lenges.

clearly not all caregivers maintain full-time employment. Yet, according to the studies, approximately 47 million American workers are serving as volunteer caregivers for aging, disabled, or chronically-ill loved ones.

Employees serving as caregivers regularly find themselves in tight work situations that often require appeasing one demand while disappointing another.

Saying “no” to a hurting family member to maintain work responsibilities can significantly strain an

As someone who has faced this issue on an extreme

already-stretched home life. Saying “no” to an em-

level, I receive many requests to address this topic.

ployer, however, presents a new basket of problems.

My passion is to equip caregivers with easy and

Caregivers often find themselves balancing on the

practical tips on not only staying employed, but also

tightrope of not presuming upon the generosity of

excelling in the workplace.

fellow employees and supervisors while keeping

One of the most challenging issues I have faced as a

home front crises at bay.

caregiver for twenty-seven years is balancing work

Is it any wonder that many caregivers decline pro-

and my wife’s chronic and pressing medical issues.

motions that would come with increased wages to

These issues include:

avoid the extra responsibility that comes with work-

• 74 operations (including multiple amputations) • Treatment at 12 different hospitals by more than 50 physicians • $9,000,000 in healthcare costs

place advancement? Sometimes, it is easier to leave the workforce altogether. This decision affects not only the household budget, but is ultimately felt in

I recall the day that started somewhat “normal,” but

the community (local businesses), lack of charitable

by the time our sons’ school let out, my wife was

giving (churches, non-profits, etc.), and even in the

admitted into the hospital and facing surgery. Jug-

tax base of our national economy.

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For many years, I took jobs I really did not want for

Human nature being what it is, disclosing too much

insurance and flexibility of schedule. Like many

personal information can have drawbacks, so care-

caregivers, my earning potential and advancement

givers need to be extra cautious to only provide in-

took hits on numerous occasions. Also like many

formation that is pertinent to the workplace. A quali-

caregivers, I learned to adapt and “figured out how

fied counselor (private or through an Employee As-

to make it work.” Along the journey, I discovered

sistance Program) can serve as a sounding board for

that bosses and supervisors could be understanding, but required good communication

caregiving, that I learned the

Forthright Surprises rarely create good

tors can also be a help in this matter.

answer is always

It was while balancing work and

• Be FORTHRIGHT with the Boss • Ask for FLEXIBILITY • Give a FAIR day’s work

circumstances. Human Resources direc-

The

about the circumstances.

three “F’s:”

how to approach a supervisor to discuss caregiving

Counselors, therapists, and pastors can all serve as sources of wis-

“no” until you ask.

dom and coaching to help plan

Work schedules are not the

how to approach a boss or su-

Where does it say, “Thou

Flexibility The answer is always “no” un-

feelings in a workplace. Employ-

Ten Commandments.

shalt not swap shifts?”

ers are likely to be more understand-

til you ask. Work schedules are not the Ten Commandments.

Where does it say, “Thou shalt not

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ing and accommodating if they know up front some of the challenges that may affect

pervisor.

swap shifts?” Who says working from home on certain occasions is out of the ques-

work performance and/or schedules. Taking a proac-

tion? The evolution of the modern workforce is as-

tive stance and letting supervisors into the loop,

tonishing. No longer do we have an industrial mind-

without disclosing too much personal information,

set where work only happens during certain and spe-

can be a help down the road when crises occur.

cific hours of the day. Many jobs cater to the global

Sometimes a boss can be a friend, but experience

economy and the mobile and virtual offices in to-

cautions me to keep the relationship limited to busi-

day’s workplace. Granted, a nurse at a hospital or a

ness if possible.

server at a restaurant works well-structured shifts, but those and many other jobs can be tweaked. continued next page

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Fair If the workforce surrounding us understands that we deliver quality work without sloughing off, we can earn many chips to cash in during extreme scenarios. No one wants to help lazy or entitlementminded individuals, so if we earn a reputation as an industrious and responsible employee (and we caregivers are by definition industrious and responsible people), other workers and supervisors will feel more inclined to accommodate shift changes, task reassignments, and even tardiness or leaving early.

In my years of caregiving, I developed a simple numeric plan to help me stay on track in all the major impact areas of caregiving. Those areas affected by caregiving are: health, emotions, lifestyle, profession, money, and endurance (they spell out HELP ME!) For the profession component, I found the following items to be easy reminders of how to shore up the professional front of my life and improve my standing in the workplace.

graduate work. Taking advantage of the opportunity to improve as an employee, as well as a person, is a smart move. One training class per year is doable. To not “bite off more than one can chew,” it is wise to avoid trying to earn a doctorate or other grand achievement in one year. Keep in mind the importance of managing expectations; taking a computer class, for example, might be a place to start. Maybe learning management skills would be a good direction for a server at a restaurant.

At lunch recently, a friend mentioned the story of a woman in his church whose husband suffered from

One Training Class Per Year From Power Point®

multiple sclerosis. Working as a physical therapist, she

to fixing a car, there are always new skills a caregiver

served as the major income source for her family.

can learn. Many companies will pay for ongoing train-

Without any warning, she arrived at work one day to

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discover a pink slip. Out of work with a disabled

cannot expect to remain employed with the same

husband and two small children, well, you can imag-

skill set they started with.” Improving market value

ine the fear gripping this woman.

as an employee by learning one new job-related skill

After an unsettling and stressful time, she has since

set each year reduces the risk of unemployment.

landed a new job. Although all seems to be well,

Two Performance Reviews Per Year While

there’s an opportunity to help her minimize the risk

some dread the annual review with the boss, I take

of this reoccurring. What if her pastor/church leaders

the opposite approach and push for even more op-

approached her and said, “We know this was a scary

portunities to evaluate performance and take out po-

time. Although we can’t keep this from

tential employment land mines. For exam-

By

happening again, we want to help you better insulate yourself from un-

How do you think the woman

communication with a supervi-

improving value to an

and even possibly underwrite

proficient in your field.”

with coworkers. Through regular

communication and

we can help arrange childcare

week or so to become more

flexibility can increase tension

incorporating better

employment. If you are willing,

your taking a class once a

ple, the constant need for scheduling

employer, caregivers can reduce the risk of

unemployment and job

would respond? In that situation,

tension

the church is caring for the practical needs, as well as the spiritual needs of this family. It might not mean much of a finan-

sor, however, the employee can turn the boss into an ally who will help run interference with disgruntled colleagues.

Just as visiting a physician twice a year provides an opportunity to discover potential health

Ꮬ

issues, two performance meetings per year with a supervisor can help identify po-

cial investment on the part of the church. Maybe just

tential employment issues.

coordinating childcare would be enough, but either

No caregiver can afford to lose a job due to office

way, it helps this woman develop a plan that will ul-

politics, backstabbing by other employees, or any

timately provide a greater sense of security for this

other performance issues even peripherally con-

family. Keeping this woman employed is in the best

nected to caregiving responsibilities. Regular com-

interest of the family, church, and society.

munication with an employer serves as a proactive

On a recent episode of 60 Minutes, I heard a major

way of keeping channels open, clearing up misun-

employer state, “… In today’s economy, workers AANLCP Journal of Nurse Life Care Planning

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derstandings before they escalate, and demonstrating initiative and responsibility.

30 Minutes a Day Away From Desk/Phone The common mistake of wolfing down a sandwich at your desk, while fielding calls and working a game of solitaire, just will not cut it for caregivers (or any worker, for that matter). Take a break.

Getting away from the desk or workplace is critical for working caregiver’s peace of mind, even if it means just sitting in the car with a book and no phone. Somewhere near the workplace a bench is waiting for a weary caregiver who needs a quiet place to collect thoughts. Every employer in America offers a break during the workday. It is imperative for workers, specifically caregiving workers, to accept those breaks to recharge, refocus, and rest for at least thirty minutes during each workday.

The strain of caregiving presents challenges. In an unstable economy, the workplace is liable to be precarious for any worker requiring greater flexibility. By incorporating such strategies as better communication and improving value to an employer, caregivers can reduce the risk of unemployment and job tension(s). The American economy is buckling, and businesses constantly examine the bottom line. An employee requiring extra flexibility or requiring “special considerations” may draw a great deal of unwanted attention. With a little communication and a proactive approach, today’s caregivers can not only minimize the risk of unemployment, but can even position themselves for advancement.

Nurse Life Care Planners examine every detail of a patient’s life. When encountering a patient’s caregiver, any NLCP can offer these easy tips that can potentially avoid additional challenges for that patient. A successfully employed caregiver helps provides resources and stability to a patient who desperately needs both.

Ꮬ Photos courtesy Peter Rosenberger and Michael Gomez Photography

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Brachial Plexus Injury/Birth Trauma and Occult Language Disorder Sally A. Asquith MS CCC-SLP Brachial plexus injury

(ASHA, 2008). (See Figure 1, Language vs. Speech)

(BPI)/brachial plexus palsy

Many support systems offset the effects, including

(BPP) are well-known disor-

early intervention, private therapy, home health,

ders occurring as birth trauma

hospital clinics, and public schools. In contrast with

events as well as sequelae from

BPI/BT, language disorders form a very large popu-

motor vehicle accidents, work

lation.

To date, there exists no evidence link-

place injuries, and other etiologies. BPI secondary to birth trauma (BPI/BT)

This

affects roughly 1.5 infants in 1000 live births (Foad, Mehlman, & Ying, 2008). The surgical and therapeutic treatments now available throughout the US range from small to large hospitals, many with sophisticated BPI-specific teams, serving this relatively small but

ing BPI/BT with language impairment despite a thorough search of web

article intends to question a

relationship and posit theories as to etiology

complicated population.

guage disorders occur in 7% of American children (ASHA, 2008), either as a stand-alone diagnosis or secondary to a multitude of diagnoses. Speechlanguage pathologists (SLPs) commonly treat language impairments more than any other diagnosis

http://mayoclinic.com; http://assh.org; http://thejns.org; http://ninds.nih.gov; http://ubpn.org; http://kennedykrieger.org; http://stlouischildrens.org;

�

According to the American SpeechLanguage-Hearing Association (ASHA), lan-

sites (http://asha.org;

http://brachialplexuspalsyfoundation.org; Sally Asquith has worked closely with life care planning teams as an expert witness in pediatric speech-language pathology.

She owns two private practices near Charleston, SC: Carolina Speech & Language Center, Inc., and Eat*Talk*Play, LLC. She is most interested in autism spectrum disorders, failure to thrive, feeding disorders, movement disorders, brachial plexus injury, apraxia of speech, bilingualism (English/Spanish), and cognitive deficits due to closed head injury.Correspondence concerning this article should be addressed to her at the Carolina Speech & Language Center, Inc., 221 Stallsville Loop, Summerville, SC 29485. E-mail: s.asquith@mycsal.com

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http://naric.com; http://bestpractice.bmj.com). Per-

multidisciplinary, comprehensive assessments for

sonal correspondence (P. Coker, personal correspon-

the purposes of life care planning.

dence, September 21, 2011) corroborates the lack of

The comprehensive assessments included language

evidence. BPI teams, therefore, generally do not in-

samples in addition to standardized testing, and this

clude SLPs. However, this article intends to question

aspect proved intriguing. Language samples involve

a relationship and posit theories as to etiology.

recording 50 to 200 spontaneous utterances in con-

We directly assessed and performed chart reviews of

versation by audio or video, transcribing as in a

a small group (N = 6) of well-documented cases of

deposition, and then analyzing for grammar, seman-

BPI/BT. There was no history of language disorder,

tics, and pragmatics (social use of verbal and non-

therapy, or familial concern. The children who were

verbal communication). Historically, language sam-

school-aged participated in regular education pro-

pling was de rigueur in the 1970s and early 1980s,

grams without incident. For four out of six, language

and remains an excellent tool for identifying pediat-

function fell generally within normal limits in stan-

ric language disorders (Heilman, Miller, and Nock-

dardized testing. (The preschool subject was re-

erts, 2010). As the availability of standardized,

ferred externally for speech-language delay.) Refer-

“packaged” tests became available, clinicians shifted

rals for evaluation only occurred in the context of

from the time-consuming task of recording, transcribing, and analyzing a language sample to the continued next page

Figure 1 Language vs. speech. ASHA, 2008 Language • deficits in grammar • encoding messages,

• describing/explaining/ • •

sequencing following directions relying on verbal vs. nonverbal messages

Speech • sound production • speed and precision of words/sentences • prosody • melody

• fluency • rate

• decoding • sustaining discourse • interpreting nuanced cues

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more straightforward and less time-consuming pub-

pragmatic functions) did curtail vocational possibili-

lished tests (Heilman, Miller, and Nockerts, 2010).

ties. The language samples indicated limits, not po-

Diagnostically, neither approach represents an abso-

tential, for any positions involving verbal problem-

lute standard; they remain options, ideally used in

solving, verbal specificity, detailed descriptions, ex-

tandem.

planations, and verbal initiative. The implications

In the midst of life care planning assessments, strik-

clearly are broad and serious. Direct therapy (to the

ing and unexpected deficits emerged in the language

children) and indirect therapy (for the parents) and

samples. Impairments ranged from significant to se-

follow-up re-evaluations were in fact recommended

rious, with lifelong implications not only for social

for each client.

skills and discourse management, but also for vocational opportunities and rehabilitation. In addition,

Subjects The BPI/BT cases are diverse for a small population,

poor discourse management (low MLU, limited

with three females and three males ranging from two

Table 1 Subject profiles Child

continued next page

Gender/CA* Palsy

Test 1 / score

MLU2

AE3

Style

Health

QF

M / 2-10

(R)

PLS-4

72

1.21

12-26

Minimalist, often nonverbal

6

KL

M / 4-8

(L)

PLS-4

102

4.35

41-46

Simplistic, often nonverbal

2

MG

F / 5-0

(R)

PLS-4

98

4.19

41-46

Telegraphic, simplistic

2357

IB

M / 5-11

(L)

PLS-4

98

5.78

47+

Simplistic, often nonverbal

N/A

LS

F / 5-11

(R)

TOLD–P:3 78

3.11

35-40

Telegraphic, simplistic

N/A

DR

F / 8-4

(L)

CELF-4

4.71

47+

Short utterances

1345

79

Legend CA = chronological age (yrs-months) Palsy: R, right; L, left

Tests:

PLS-4, Preschool Language Scale, 4th edition TOLD-P:3. Test of language development-Primary, 3rd edition CELF, Clinical Evaluation of Language Fundamentals 1 Standard scores, mean =100, standard deviation = 15 2 MLU, mean length of utterance, number of words 3 AE, Age-equivalent, months

Health: 1- Chronic otitis media 2- Reactive airway disease/asthma/ breathing problems 3- Chronic congestion 4- Chronic bronchitis 5- Frequent colds 6- Phrenic nerve palsy 7- Low tidal volume

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to eight years old. Table 1 shows their profiles by

tion such as pointing, gaze, grabbing, and reaching

gender, CA (chronological age, year-month), BPI/BT

suggest a significant lack of verbal prowess, as well

side, and standardized testing results. The tests are

as a significant lack of verbal independence. Use of

widely used in the US: the Preschool Language

few pragmatic functions curtails the speaker’s flexi-

Scale, 4th edition (PLS-4), Test of Language

bility in discourse, since other functions such as

Development-Primary, 3rd edition, (TOLD-P:3), and

Shifting Topic, Expanding, and Asking have not

Clinical Evaluation of Language Fundamentals 4th

emerged.

edition (CELF-4), each with an average range of 85

The group profile suggests that all subjects had defi-

to 115 and a mean of 100.

nite but occult language disorders not identified

Findings All language samples exhibited three key deviations from any typical trajectory of language development: short utterances, silence, and extremely limited pragmatic functions (reasons for communicating, e.g., Informing, Assenting, Answering who-what-where-when-why questions, Requesting Assis-

in standard testing. Family concern and

All

therapy referrals were negative for

exhibited three key deviations from any typical trajectory of

the five school-aged children.

Four subjects’ histories were all positive for airway and tidal volume compromise, such as

language development: short utterances, silence, and extremely limited pragmatic functions

tance) despite generally average standardized test scores.

Discussion Mean utterance length is measured in transcripts of taped interactions by calculating the average number of grammatical elements the subject uses. Short utterances reveal immature language development and telegraphic structure. Silence (i.e., extended wait times up to a full minute in the midst of conversa-

chronic bronchitis, chronic asthma, and congestion (health status of LS is unknown; health status of IB was

reportedly benign).

Ꮬ

Potential etiologies that link BPI/BT and language impairment include: • impact of difficult labor • slow or protracted labor • compromised oxygen supply • FHR decelerations • low or depressed Apgar scores • generalized distress of the newborn • chronic health conditions again affecting oxygen supply

tion) and heavy reliance on nonverbal communicacontinued next page AANLCP Journal of Nurse Life Care Planning

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• psychosocial, familial, and/or socio-economic factors such as maternal education, maternal health, access to quality healthcare Recommendation It is important to seek further information and complete more sophisticated research to rule out a link definitively (using more language measures than a

Vol. XIII No. 1

patients through a broad lens, and consider the inclusion of speech-language pathology as part of a comprehensive assessment model.

References American Speech-Language-Hearing Association (ASHA).

Incidence and prevalence of communication disorders and hearing loss in children. (2008).

test), confirm the possibility of language disorder in

http://www.asha.org/Research/reports/children/ Retrieved Feb-

BPI/BT, or identify some unrelated causality.

ruary 22, 2013

We acknowledge that the study size is too small to

Foad SL, Mehlman CT, and Ying J. (2008). The epidemiology of neonatal brachial plexus palsy in the United States.

draw any definite or statistical associations. There-

http://thejns.org Retrieved February 22, 2013

fore, further study is certainly indicated. Likely sur-

Heilman J, Miller J, and Nockerts A. (2010). Using language

veys would include birth-to-three programs as well

sample data bases. http://asha.org/LSHSS Retrieved February

as university-based BPI teams. However, given the fact that all six subjects had language disorders identified only by language sample analysis, SLP evaluation could be critical.

22, 2013 Semel I, Wiig E, and Secord W. (2003). The Clinical Evaluation of Language Fundamentals, 4th edition.

Zimmerman I, Steiner B, & Pond R (2002). The Preschool Language Scale, 4th edition.

In the interim, healthcare professionals and nurse life

Ꮬ

care planners are encouraged to view their BPI/BT

Nursing Diagnoses to Consider

NANDA-I Nursing Diagnosis, 2012-2014

‣ Readiness for Enhanced Communication: A pattern of exchanging information and ideas with others that is sufficient for meeting one’s needs and life’s goals, and can be strengthened (Domain 5, Perception/Cognition; Class 5, Communication) ‣ Impaired Verbal Communication: Decreased, delayed, or absent inability to receive, process, transmit, and/or use a system of symbols (Domain 5,Perception/Cognition; Class 4: Communication) ‣ Delayed Growth and Development: Deviation from age group norms (Domain 13: Growth/Development, Class 2: Development)

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Apps for Communication Carol A. Page PhD CCC-SLP ATP Children with a wide variety of

across the screen. Other users have difficulty carry-

medical diagnoses are nonverbal

ing traditional communication devices that may

or partially verbal and benefit

weigh more than 2 kg, but find an iPad, iPod or An-

from augmentative communica-

droid easy to carry or even put in a pocket as they

tion devices. These diagnoses

weigh much less. Commercial mounting systems are

include cerebral palsy, down syndrome, Rhett syn-

available for wheelchairs, or the individual can

drome, traumatic brain injury including stroke,

transport the device in a backpack or bag.

autism, and developmental disabilities. Sometimes a

http://enablingdevices.com/catalog/AdaptedElectroni

child’s expressive communication disorder is iso-

cs/iPad_Accessories/ipad-mounting-system)

lated and other times it is part of a much larger set of symptoms.

Several devices are currently very popular as communication devices. Communication apps available

Augmentative communication devices now include

for the iPhone, iPad and Android have picture com-

iPads, iPods and Android devices. The apps for these

munication symbols, an alphabet board, or both.

devices are not specific to child or adult; the intellec-

Communication apps and iPod and iPad price infor-

tual and language capabilities of the individual are

mation can be found at https://itunes.apple.com .

primary considerations in choosing an app. Apps that

Prices for Android devices and communication apps

are most user-friendly require minimal set up to meet

can be found at http://www.android.com/apps/ .

the individual’s current communication needs, and can grow as skills increase.

Selecting devices for children There is some important information to consider

It’s important to remember that some people are not

when selecting apps for communication for children

a good fit for the iPad, iPod or Android devices.

regardless of medical diagnosis.

Limitations in hand movement or difficulty isolating a finger may cause more than one letter or message to be pushed at a time. Sometimes the user pushes the screen too hard or too lightly to activate it. Some users don’t have enough range of motion to swipe

Carol Page is the Director of the South Carolina Assistive Technology Program (SCATP) at the USC School of Medicine, Center for Disability Resources, Department of Pediatrics. She has her assistive technology practitioner certificate from the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA). Carol provides trainings at a local, state and national level on assistive technology for persons with disabilities of all ages, their caregivers and professionals who serve them.

She may be contacted at Carol.Page@uscmed.sc.edu

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Vol. XIII No. 1

One important consideration is the vocabulary the

moved. This is because reinforcing “muscle mem-

picture symbol app offers. The apps to consider in-

ory” happens when a task movement is repeated over

clude core vocabulary of the approximately 300

time, eventually allowing it to be performed without

high-frequency words that make up 80% of what

conscious effort (Mahony, Robinson & Perales 2004;

people say. The other 20% are called fringe vocabu-

Valvano & Rapport 2006; Whinnery & Whinnery

lary and are unique to the person (Baker et al. 2000).

2007). Typing and riding a bike are examples of us-

You can find lists of core vocabulary words at

ing muscle memory.

http://aac.unl.edu/vbstudy.html . The apps reviewed

Children can develop muscle memory for touching

in this article provide pre-made pages of core vo-

specific parts of the screen without thinking

cabulary with options to customize fringe

about it. Therefore, a great feature to

vocabulary.

look for in apps is the ability to

The intellectual

Interestingly, there are very few

and language

nouns in core vocabulary. Providing a child with a communication app that is full of nouns may be very motivating at first because nouns provide

gradually reveal picture symbols without moving them, thus

capabilities of the

promoting muscle memory.

The child starts with many

individual are primary

great rewards, but can quickly lead to frustration. Children

considerations in choosing an app

naturally want to say so much more. Failing to provide adequate

message squares but with only a few of the picture symbols visible. As the child’s communication skills progress, picture symbols can be revealed

Ꮬ

without having to change the location

vocabulary for the child can result in the

of any of the picture symbols. (Compare

child refusing to use the device.

Figures 1 & 2) Speak for Yourself provides a com-

Another important consideration is how many pic-

munication board and an open/close feature for hid-

ture symbols to provide on a page. Sometimes two

ing individual communication symbols as needed.

messages are provided initially, then 4, 8, 16, 32 and

As when planning for any communication software

so on as the child’s communication skills progress.

or app, it is best to work with a speech-language pa-

This approach fails to consider the frustration some

thologist (SLP) to determine the best fit for an indi-

children feel when communication symbols are

vidual. An SLP is the only professional who can continued next page

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Figure 1. Partial reveal

Vol. XIII No. 1

Figure 2. Total reveal

evaluate for and recommend a communication de-

identifies augmentative communication devices and

vice.

accessories for the provider. (Table 2)

Funding Professionals and family members want to know

The SLP uses a feature matching paradigm to put client and device together. Initially, the individual’s

what funding sources are available. Before begin-

continued next page

ning the evaluation for an augmentative communication device, identify funding sources available for the assessment and therapy. Contact the family’s private insurance company first. Sometimes insurance companies will pay for part or all of the evaluation, therapy, or communication device. If the insurance company denies the request for funding, and there are no other avenues for funding, Medicaid is the payor of last resort. Medicaid programs do not al-

Table 1. CPT codes for professional services

for augmentative communication

‣ 92605 - Evaluation for prescription of non‣ ‣

ways cover iPads or iPods. Current Procedural Terminology (CPT) codes identify augmentative communication procedures or services. (Table 1)

‣

Healthcare Common Procedure Coding System (HCPCS) Level II codes are administered by Centers for Medicare and Medicaid Services (CMS). HCPCS

‣

speech generating augmentative and alternative communication device 92606 - Therapeutic service(s) for the use of non-speech generating device, including programming and modification 2 / 3 92607 - Evaluation for prescription for speech-generating augmentative and alternative communication device, face-toface with the patient, first hour 92608 - Evaluation for prescription for speech-generating augmentative and alternative communication device, face-toface with the patient, each additional 30 minutes 92609 – Therapeutic services for the use of speech-generating device, including programming and modification

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Table 2. HCPCS codes for professional

services for augmentative communication

‣ E1902 – Communication board, nonelectronic augmentative or alternative communication device

‣

strengths and needs and review of communication software and apps, a successful communication system can be initiated. The SLP typically performs an annual evaluation and updates the treatment plan and device as needed.

E2500 – Speech generating device, digitized speech, using pre-recorded messages,

It can be difficult to know what apps are available

less than or equal to 8 minutes recording time.

and what features the apps have. The South Carolina

‣ E2502 – Speech generating device, digitized speech, using pre-recorded messages,

‣

Vol. XIII No. 1

Assistive Technology Program has a comparison chart of communication apps for iPhones, iPods, and

greater than 8 minutes, but less than or

iPads and their features at:

equal to 20 minutes recording time.

http://www.sc.edu/scatp/apps.html

E2504 – Speech generating device, digitgreater than 20 minutes, but less than or

A Few Examples One app that has gotten considerable notice is

equal to 40 minutes recording time.

Proloquo2Go, a communication app for iPhones,

ized speech, using pre-recorded messages,

‣ E2506 – Speech generating device, digitized speech, using pre-recorded messages, greater than 40 minutes recording time.

‣ E2508 – Speech generating device, syn-

iPods, and iPads that provides voice output for people of any age who are having difficulty speaking.

Proloquo2Go comes with pre-made communication

thesized speech, requiring message formu-

page sets and turns picture symbols into speech. Al-

lation by spelling and access by physical contact with the device.

most 8,000 picture symbols are available to create

‣ E2510 – Speech generating device, syn-

new messages. Proloquo2Go also allows you to take

thesized speech, permitting multiple meth-

photographs with your iPad and easily import it to

ods of message formulation and multiple

make a picture icon for a message. Does this sound

methods of device access.

complicated? It’s not. There is a “home” icon located

needs regarding a communication system will be

centrally at the bottom of each page. No matter

documented. Next, software or apps that have the

where you find yourself, you can press “home” and

features that would meet those needs are considered.

it will take you to the first or “home” page.

This includes trial use of the app. Finally, a commu-

Some of the messages that are pre-programmed con-

nication device with software or app is determine to

tain phrases or complete sentences that could prevent

be the best fit. With careful assessment of the child’s

the child from communicating an exact message. For continued next page

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Vol. XIII No. 1

example, if the message is “What TV shows do you

then describing words and finally nouns on the right.

watch?” it would be difficult for the child to say “I

With this layout, it’s easy to create a phrase or a sen-

don’t want to watch that show.” Most people find it

tence, like “I - want - the - TV - remote.”

more meaningful to just include the word “TV” and

Another picture-based communication app is Sono-

other single words like “like, don’t, watch, on, favor-

Flex. It has two female voices and one male adult

ite, show, off” to add to it. By combining single

voice to choose from. It is set up much like Touch-

words, the user can really get a specific point across.

Chat HD – AAC with Word Power. It offers single

Single words can be easily programmed into Prolo-

words set up with pronouns on the left and then

quo2Go.

builds to the right with verbs, small words,

There are other picture-based communication apps to consider. Touch Chat provides five US English voices to choose from. It has six pre-made page sets similar to those found in Proloquo2Go, has some child vocabulary, and is easy to customize. TouchChat HD AAC with WordPower is a

and nouns. The last column is made up of “topic,” or context, buttons. You

It’s important to

can choose four topics out of the

use a communication

50 provided or create your own.

Within each topic are pages of

app for daily activities

related vocabulary. More top-

during a trial period to

ics can be added and more

determine the best fit for the individual.

very robust program with all that

added. Over 11,000 communication pictures are available. A set of quick phrases is ready for

Ꮬ

Touch Chat offers and more. Over 10,000 pictures are included for customizing

pages within topics can be

easy access. A link to a “history” page provides a way for the user to replay mes-

buttons. In addition to the six different page sets in

sages created earlier.

Touch Chat, it adds seven pre-made page sets with

Talk Tablet NEO comes with pre-programmed page

high-frequency core vocabulary words. The core vo-

sets. It lets the user choose between three US English

cabulary words are grammatically positioned from

voices and one Latin American Spanish voice. The

left to right just the way you speak and write. This

app can be programmed with the provided 12,000

means that pronouns, words like I, she, he, you are

communication pictures. It comes with a setting that

on the left followed by verbs or action words and

allows certain message buttons to be hidden. continued next page

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A new feature found in iOS6 is called Guided Ac-

References

cess. This feature locks in the use of one app on the

Baker, B., Hill, K., Devylder, R. (2000). Core vocabulary is the

iPad until a four digit code is entered. Guided Access

same across environments. Paper presented at a meeting of the technology and Persons with Disabilities Conference. Califor-

deactivates the home, power, and speaker buttons

nia State University, Northridge.

and locks out access to user-designated parts of the

http://www.csun.edu/cod/conf/2000/proceedings/0259Baker.ht

screen. For users who accidentally hit the home key or would rather play games than use the communica-

m.

Dada, S. & Alant, E. (2009). The effect of aided language stimulationon vocabulary acquisition in children with little or

tion app, Guided Access is the answer. More infor-

no functional speech. American Journal of Speech-Language

mation about Guided Access can be found at

Pathology, 18, 50-64.

http://appadvice.com/appnn/2012/09/new-feature-in-

Mahony G, Robinson C, Perales F. (2004) Early Motor Inter-

ios-6-how-to-use-guided-access .

vention: The Need for New Treatment Paradigms. Infants & Young Children 17(4):291-300.

A Final Note It’s important to use a communication app for daily

Romski, M. & Sevcik, R.A. (2003). Augmented language in-

activities during a trial period to determine the best

Beukelman, & J. Reichle, Communicative competence for chil-

fit for the individual. Some apps offer a lite version so that you can try the app prior to purchasing the

put: Enhancing communication development. In J. Light, D. dren who use AAC: From research to effective practice (pp.

147-162). Baltimore: Brookes.

Valvano J. & Rapport MJ. (2006). Activity-focused Motor In-

full robust version. The SC Assistive Technology

terventions for Infants and Young Children with Neurological

Program loans iPads for trial use at no charge to the

Conditions. Infants & Young Children 19(4):292-307

borrower through their Device Loan Program:

Whinnery K.W. & Whinnery S.B. (2007). MOVE Systematic

http://www.sc.edu/scatp/loan.htm . Other programs may also offer loaners for trial before purchase.

Some individuals will respond positively to a com-

Programming for Early Motor Intervention. Infants & Young Children 20(2):102-108.

White, S. C. & McCarty, J. (2011). Bottom Line: Reimbursement for AAC Devices. The ASHA Leader, 10.

munication app; others will need to see the use of the app modeled by significant others for days or weeks before using it successfully. Studies suggest that

Nursing Diagnoses to Consider NANDA-I Nursing Diagnosis, 2012-2014

modeling can facilitate vocabulary acquisition and language skills (Dada & Alant, 2009; Romski &

Please see page 17

Sevcik, 2003). Using this and other research-based best practices and resources provided herein will ensure the highest success.

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Vol. XIII No. 1

Motor Skills In Children Susan B. Jeter MS LPE Motor milestones are the

(buttoning, zipping, or tying) and early learning ac-

major areas of development for

tivities (coloring, copying, tracing, or cutting). Other

children, the gross motor and

children can have problems with the large muscles

fine motor skills that emerge

(gross motor skills) that can lead to clumsiness and

and develop over time. They

coordination difficulties.

are like building blocks for the infant and child for

A delay means a skill develops much later for a

further motor growth and learning. There are

child compared to similar age children. To

two categories of motor skills: • Gross motor skills: using the large muscle groups for mastering skills, e.g., walking, kicking, hopping, climbing stairs • Fine motor skills: using the small muscle groups for finger tasks,

assess delays, it is important to have criteria from medical charts and

Normal range

maps for what is considered

for toddlers and

“typical.” The general guide-

children in reaching

fine and gross motor milestones is quite

e.g., grasping and holding eating utensils or

wide.

crayons (Learning Disabili-

Motor Coordination Disorder The general term motor coordination disorder has

stones appear in Table 1.

Normal range for toddlers and children in reaching fine and gross motor milestones is quite wide. However, when they

Ꮬ

are taking too long to use these mo-

ties Association of America, 1999)

lines for motor skill mile-

tor skills, they may have delays. Important signs and symptoms of motor delays are summarized in Table 2.

historically been used to describe and classify motor skill delays. For example, a child may have difficulties coordinating the small muscles (fine motor skills) that can result in difficulties with dressing

Susan Jeter is the owner of Educational Edge, specializing in psychoeducational testing, workshops, and inservices for parents and teachers on ADHD, psychoeducational testing, learning disabilities, and dyslexia. Her professional interests include identification of learning disabilities from kindergarten through college age students. She can be contacted at 415 N. McKinley #280E, Little Rock AR 72205, susanjeter@comcast.net

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Vol. XIII No. 1

Table 1. Typical motor skill developmental milestones

(National Center for Learning Disabilities, 2006)

By Age One: • Gross Motor Sits without support Pulls self up and stands without help Walks with help Rolls a ball in imitating an adult • Fine Motor Reaches for, grasps, and puts objects in mouth Picks things up with a “pincher” grasp (thumb and 1 finger) Transfers objects from one hand to the other Drops and picks up toys

By Age Four: • Gross Motor Walks on a line Balances on one foot for five to ten seconds Hops on one foot Rides a tricycle Uses a slide independently Throws ball overhead Catches a bounced ball • Fine Motor Stacks up to nine blocks Copies a circle Manipulates clay type materials

By Age Two: • Gross Motor Walks alone Walks backwards Picks up toys from floor without falling Pulls and pushes toys Seats self in child size chair Walks up and down stairs with hand being held • Fine Motor Stacks three blocks Turns knobs Throws a small ball Scribbles Turns pages two or three at a time

By Age Five: • Gross Motor Walks backwards toe to heel Jumps forward ten times without falling Walks up and down stairs independently and alternating feet • Fine Motor Cuts on line continuously with scissors Copies a cross and a square Prints some capital letters

By Age Three: • Gross Motor Runs forward well Jumps in place with two feet together Stands alone with one foot with aid Kicks a ball forward • Fine Motor Holds crayon with thumb and fingers (not fist) Uses one hand consistently in most activities Snips with scissors Turns single pages

By Age Six: • Gross Motor Runs lightly on toes Walks on a balance beam Skips on alternate feet Jumps rope • Fine Motor Cuts out simple shapes Copies triangle Copies first name Prints numbers one through 5 Colors within lines • Hand dominance well established

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Table 2. Important signs and symptoms of mo-

tor delay (whattoexpect.com, 2012)

Vol. XIII No. 1

Current medical theories often report some type of neurological condition as the cause for these motor difficulties. Current research reports that an esti-

• Being late to reach early physical • • • • • • • • •

milestones, e.g., rolling over and sitting up No signs of walking by 18 months Stiff/tight arms and legs Weak or low muscle tone Being unable to use one side of the body as easily as the other Having trouble holding and using objects Being clumsy and falling frequently Having trouble chewing and swallowing Drooling beyond 18 months Losing motor skills previously mastered

Developmental Coordination Disorder This is the current medical diagnosis applied when children are not developing normal motor coordination and have difficulties that involve both large and small muscles. The medical diagnostic code for this disorder in the ICD-9 and DSM-IV classification systems is 315.4. It is often first noticed when the child does

mated 6% of children between the ages of 5 and 11 have developmental coordination disorder. (Encyclopedia of Mental Disorders, 2012) Also, this condition is known to affect males and females equally, and it appears to often occur with speech-language disorders. (Encyclopedia of Mental Disorders, 2012) Dyspraxia refers to a specific motor disorder involving problems with planning and completing intended fine motor tasks. It occurs more often in males than females. (Dyspraxia Foundation USA, 2012) Common signs of dyspraxia in children include: • problems with eye movements • holding utensils • walking and hopping • delays in spoken language with speech hard to understand • late to establish right-left handedness • difficulties with dressing • handwriting problems • poor sense of direction • sensitivity to touch (Dyspraxia Foundation USA, 2012)

not reach the important milestones such as walking

Pediatricians usually monitor children’s motor de-

and dressing. These children are often developing

velopment at well-child medical appointments. It is

normally every other way. However, this disorder

very important for parents to discuss any concerns

can lead to social and/or academic problems for the

about possible physical delays with the pediatrician.

child, such as avoidance of play-type activities and

The pediatrician will examine the child to rule out

problems with handwriting. (Encyclopedia of Mental

central nervous system disorders and eyesight or

Disorders, 2012)

hearing problems that interfere with muscular coor-

continued next page AANLCP Journal of Nurse Life Care Planning

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dination. (University of Michigan Health System,

noticeable. Children with motor delays often have

2012)

problems later in school with handwriting and other

The pediatrician may recommend speech-language,

classroom motor activities. As teenagers and adults,

occupational, and physical therapy assessments to

motor difficulties can continue to negatively affect

test the child’s muscle tone, muscle strength, re-

daily living skills including:

flexes, and coordination. This may result in a specific diagnosis such as general hypotonia, dyspraxia, or simple motor delay.

It is

Treatment typically involves some form of therapy (speech-

important for a child

language, occupational, or physical). (University of Michigan Health System,

• driving •completing household chores • cooking •personal grooming •various self-help activities (Encyclopedia of Mental Disor-

with developmental coordination disorder to receive

2012) It is important for a child with developmental coordination

individualized

disorder to receive individualized

therapy

therapy because secondary problems

Funding Private insurance may cover assessment and/or therapies.

For children not covered by health insurance, occupational therapy typically costs about $150 to $200 for an initial evaluation and then $50 to $200 per hour

Ꮬ

for the direct therapy services depending

that result from extreme clumsiness can be very distressing. As they age, these children

ders, 2012)

on the type of service and the provider. (Univer-

often have problems playing with their peers because

sity of Michigan Health System, 2012)

of an inability to perform the physical movements

There are also state-funded services for children un-

involved in many games and sports. (University of

der the age of 6 years providing these services at no

Michigan Health System, 2012)

cost. In most states, the Early Intervention program

Unpopularity with peers or exclusion from their ac-

serves children 0 to 2 years, and the Early Childhood

tivities can lead to low self-esteem and poor self-

program serves children 3 to 5 years. These services

image. Children may go to great lengths to avoid

include providing children with testing/assessments,

physical education classes and similar situations in

developmental therapies, and structured preschool

which their motor coordination deficiencies might be

programs. (University of Michigan Health System, 2012) continued next page

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formation for Early Intervention and Early Child-

Encyclopedia of Mental Disorders; http://www.minddisorders.com/Del-Fi/Developmental-coordin ation-disorder. Retrieved 2012

hood services, contact the state’s Division of Devel-

Learning Disabilities Association of America, 1999 ldonline.org Retrieved 2012.

For specific testing, programming, and referral in-

opmental Disabilities Services. To locate these services and contacts by state, go to www.nichcy.org/babies.

References Bailey M., MD, medical director, Duke Health Center at Southpoint, Zeltsman M, DO, pediatrician, Joe DiMaggio Children's Hospital, Yeargin-Allsopp M, MD, medical epidemiologist, National Center on Birth Defects and Developmental Disabilities, CDC. The American Academy of Pediatrics.

The National Dissemination Center for Children with Disabilities.

The American Academy of Pediatrics website. The National Dissemination Center for Children with Disabilities. Retrieved 2012; http://www.healthychildren.org/English/health-issues/condition s/developmental-disabilities/pages/Occupational-Therapy.aspx Bax M, Hart H, Jenkins SM. Developmental disorders. In: Child Development, Child Health. Blackwell Scientific; 1990:106-48, 229-68.

Dyspraxia Foundation USA, 2012 http://www.dyspraxiausa.org/symptoms/dyspraxia-facts

Nursing Diagnoses to Consider

Lingam R, Hunt L, Golding J, Jongmans M, Emond A. Prevalence of developmental coordination disorder using the DSMIV at 7 years of age: a UK population-based study. Pediatrics.

Apr 2009;123(4):e693-700.

Gillberg C, Kadesjo B. Why bother about clumsiness? The implications of having developmental coordination disorder (DCD). Neural Plast. 2003;10(1-2):59-68.

National Center for Learning Disabilities, Early IdentificationMotor Skills Milestones. 2006 www.ncld.org retrieved 2012 Ibid., Every Child is Learning: A Training Program for Parents and Teachers. 2000 Early Identification- Normal and Atypical Development Retrieved 2012 University of Michigan Health System, 2012 http://www.med.umich.edu/yourchild/topics/devdel.htm (2012) Whattoexpect.com http://www.whattoexpect.com/developmental-delays-in-childre n/fine-motor-delays-and-gross-motor-delays-in-toddlers.aspx (2012)

Please note: The JNLCP could not verify each of these references. Please contact the author directly for further information.

NANDA-I Nursing Diagnosis, 2012-2014

‣ Impaired Physical Mobility Limitation in independent purposeful physical movement of one or more extremities (Domain 4, Activity/Rest; Class 2: Activity/Exercise)) ‣ Risk for Chronic Low Self-Esteem: Risk for long–standing negative self–evaluating/feelings about self or self-capabilities / (Domain 6, Self-Perception; Class 2: Self-Esteem) ‣ Powerlessness: Perception that one’s own action will not significantly affect an outcome; perceived lack of control over current situation or immediate happening (Domain 6, SelfPerception; Class 1: Self-Concept) ‣ Risk for Situational Low Self-Esteem: Risk for development of a negative perception of self–worth in response to a current situation (specify) (Domain 6, Self-Perception; Class 2: SelfEsteem) ‣ Delayed Growth and Development: Deviation from age group norms (Domain 13: Growth/Development, Class 2: Development) AANLCP Journal of Nurse Life Care Planning

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Pediatric Life Care Plan Development: An Overview of IDEA and Section 504 Mariann Cosby MPA MSN RN PHN CEN NE-BC LNCC CLCP CCM MSCC Steven M. Cosby MS Ph.D ABSNP

Ꮬ

A Life Care Planner reviews

tempting to understand myriad alphabetical abbre-

records to provide medical back-

viations, unfamiliar educational jargon, and various

ground and information as part of

complexities of education laws.

the client’s history in re-

lationship to the foundation for a

This article will not delve deeply into

School records

plan. One aspect of the record re-

child. Rather, we want to pro-

information about

unique to a Pediatric Life Care Plan is the review of school

Review of educational

ices for the disabled school-aged

contain

view process that may be

or educational records.

laws and eligibility criteria for serv-

vide the Life Care Planner with baseline information and

medical, physical, behavioral, socialization,

records is important because

mental health problems,

the records contain not only

services, and equipment.

academic information about an individual, but can contain informa-

tionally the records may contain information on

eral laws (IDEA and Office of Civil Rights (OCR) Rehabilitation Act of 1973, Section 504) which apply to children

Ꮬ

with disabilities in the educational setting, some comparisons and differ-

tion about medical, physical, behavioral, socialization and mental health problems. Addi-

terminology about two Fed-

ences between them, and their implications for the Life Care Planning process and development.

services and/or equipment already being provided to a student while in school.

The educational system is regulated by many unique laws and processes. The Life Care Planner who may not have worked with children with disabilities or special needs can anticipate some angst while at-

Marianne Cosby is the owner of MFC Consulting in Northern California, providing legal nurse consulting, life care planning, medical cost projections, case management, and expert witness services. She has extensive experience in clinical, management, teaching and consulting positions in emergency nursing, pediatrics, geriatrics/public health and school nursing, currently consulting for California Correctional Health Care Services. Steven Cosby has Board Certifications in Hypnotherapy, Neurolinguistic Programming, A.B.H. and Diplomate in School Neuropsychology, A.B.S.N.P. Now in semi-retirement, he continues to study the human condition, researches, writes, and consults.

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Vol. XIII No. 1

Overview of Educational Disability Laws

students to specialized physical healthcare services

Two U.S. Federal laws which address children with

or other qualified person under the category of re-

disabilities in the educational setting are often re-

lated services (Table 1) (IDEA, 2004;Title 34 C.F.R

ferred to as IDEA/special ed and Section 504.

What is IDEA? IDEA is the acronym for Individuals with Disabilities Education Act, the primary Federal law that governs how all states provide special education and related services to children. It also provides some funding to state and local education agencies to guarantee special education and related serviced for those students who meet the eligibility criteria of distinct categories of disability, which also have their own criteria (Table 1).

(SPHCS) which are often provided by a school nurse

§300.34).

What is an IEP? For children between the age of 3-21, IDEA Part B requires the development of an Individualized Education Program (IEP) which plays a major role in special education. The National Dissemination Center for Children with Disabilities (NICHCY) (2013) http://nichcy.org/schoolage/iep/meetings explains and describes the IEP process in detail.

It is important to understand that the special education placement process usually starts when a child is

Although amended over time, the primary legislation

identified by either a school staff member or par-

of the Act has been in effect since 1975. The law en-

ent(s) as a child with a suspected disability. A

titles every child with a disability to a free and ap-

problem-solving team meeting typically convenes to

propriate public education (FAPE) in the least re-

discuss concerns and begin to document appropriate

strictive environment (LRE) designed to meet the

interventions, e.g., modifications and/or accommo-

child’s individual needs under the Act’s rules and

dations. This team may be called a Student Services

regulations (IDEA, 2004, Title 34 C.F.R §300.101,

Team, Student Assistance Team, Pre-Referral Team,

2013, http://www.ecfr.gov). More recent amend-

Student Success Team (SST) or Intervention Re-

ments added early intervention for disabled students,

sponse Team (IRT) (Gibbons, Lehr & Selekman,

the education of disabled students with their non-

2013). Be alert to these terms and, if appropriate,

disabled peers, the setting of higher educational ex-

request these records.

pectations for disabled students, and strengthening the role of the parents. The 2004 IDEA reauthorization reinforced the entitlement of special education

The team may refer the student for individualized assessments to determine if the child meets eligibility requirements for special education program continued next page

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placement. These assessments are typically done by

educational entity and the family. It typically out-

staff members from multiple disciplines; they, along

lines the adjustments the student will receive during

with the parent, make up most of the IEP team.

the year. Modifications can be made at any time by

IEP team membership depends, according to legal

request of any team member. After a period not to

mandates, on the needs of the child. The team can

exceed one year by statute, a meeting is held to re-

include a school psychologist, special education

port the child’s progress. Every three years an IEP

teacher, regular teacher, school nurse, speech and

meeting, called a triennial, is held to determine if the

language pathologist, occupational therapist, physi-

child requires continuing services, unless all parties

cal therapist, school administrator, adaptive physical

agree that no further assessment is necessary to meet

education teacher, parent(s) or representative, and, if

FAPE (IDEA, 2004; Title 34 C.F.R §300.303).

desired, the child.

Who pays for special education services?

Once each discipline assesses whether the child meets criteria for its particular area of service and is found eligible for services, the IEP team convenes.

The process to develop goals and objectives* to serve the needs of the student begins. (IDEA, 2004, Title 34 C.F.R §300.320; Zimmerman, 2013, NICHCY, 2013, http://nichcy.org/schoolage/iep/team ).

Since IDEA mandates that all children with disabilities must be afforded free and appropriate public education in the least restrictive environment, the parents do not have to pay for the special education services required for their child. Nor do they have to pay for related services that make it possible for the child to function in the public education environment. Funding IEP services is the responsibility of the educational entity, typically the school district

When the team agrees on placement, the goals and

(Gibbons et al. 2013, p.268).

objectives for services are outlined in the IEP; it be-

continued next page

comes the legal contract between the school district/ * In this context, goals are general or broad statements of purpose or intent. They are concerned with a particular achievement without time requirements and no specific output. They are not quantifiable. Goals should relate directly to the needs that have been identified through assessment. The goal statement must refer to the target deficit as defined in the assessment report. e.g., To improve written language.

Objectives are desired accomplishments that can be measured within a given timeframe and under specific conditions which, if attained, advance the student toward the corresponding goal. Objectives should include the following

components and answer these questions quantitatively: Learner: Who will learn?

Conditions: Under what conditions must the student demonstrate what has been learned?

Behavior: What action must a student execute to demonstrate learning?

Performance: To what degree of accuracy, frequency, or quanta?

Example: By June, the student will diagram a sentence which contains two clauses with 90% accuracy on 8 out of 10 trials within a 5 minute timeframe during English class.

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What is an IFSP?

http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-vol

As part of Early Childhood Intervention programs or

1/pdf/CFR-2012-title34-vol1-part104.pdf )

Child Find of Part C of IDEA, a child younger than three identified with a disability requires an Individualized Family Services Plan (IFSP) rather than an IEP. These plans are tailored to meet the specific concerns, priorities and resources of the family with the goal of developing and implementing a plan to enhance the child’s development so that the child is not at a disadvantage when the time comes to enter the academic environment.

Section 504 requires school districts to provide a free appropriate public education to qualified students with a physical or mental impairment that substantially limits one or more major life activities, regardless of the nature or severity of the disability.

Under Section 504, this means providing regular or special education and related aids and services designed to meet the student’s individual educational needs as adequately as the needs of nondisabled stu-

It important to know that parents may be charged for

dents are met. The goal is to ensure that students’

some of the services in this type of plan (Gibbons, et

disabilities will not limit their ability to benefit from

al., 2013 p. 272; NICHCY, 2013.

the educational program (Gibbons, et al., 2013;

http://nichcy.org/schoolage/iep/team)

NICHCY, 2013 http://nichcy.org/laws/section504).

What is Section 504?

Part of the Rehabilitation Act of 1973, Section 504 is a Federal civil rights nondiscrimination law that applies to all individuals with disabilities, including children covered under IDEA and adults. The law has two primary components. First, it protects people with disabilities by eliminating barriers to full participation in various areas of life, such as education and in the workplace. Second, it prohibits discrimination on the basis of disability and mandates the development of an individualized accommodation plan, often called a 504 Plan (Gibbons, et al., 2013, p. 278; Section 504, 2012

Various amendments over time have determined that this applies to programs and activities conducted by any governmental agency or any recipient of Federal financial aid; this includes most schools (Gibbons, 2013). In 2008 the Americans with Disabilities Act of 1990 (ADA) was amended which included a conforming amendment to the Rehabilitation Act of 1973. The amendment affected the meaning of disability in Section 504 and broadened the interpretation of disability (NICHCY, 2012 http://nichcy.org/understanding-the-ada-and-section504).

continued next page AANLCP Journal of Nurse Life Care Planning

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What is a 504 Plan?

504 but not necessarily covered under IDEA in-

In an educational setting, 504 Plans are developed

clude:

for students with a disability or chronic condition

• allergies • inflammatory bowel disease • cystic fibrosis • asthma • obesity • diabetes •rheumatoid arthritis

who do not qualify for special education services under IDEA. Section 504 Plans are for the individual with a perceived disability or the individual who is regarded to have an impairment or a record of such where a physical or mental condition substantially

School records

the same-age peers in the general population.

The intent of the 504 Plan is to accommodate for differences within the regular educa-

tory bowel disease may need im-

contain

limits one or more major life activities when compared with

For example, a child with inflammamediate access to the bathroom

information about medical, physical, mental health problems, services, and equipment.

tion 504, 2012, Title 34 C.F.R

Ꮬ

(Gibbons, 2013). An individual who has an otherwise

behavioral, socialization,

tion environment (Table 2) (Sec-

without asking for permission

qualifying disability that does not interfere with educational progress or major life activities may not be served under this code.

The 504 Plan qualification process A request for a Section 504 plan accom-

§104.3(j)(2)(ii) ; http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-vol

modation begins with a referral to determine eligi-

1/pdf/CFR-2012-title34-vol1-part104.pdf ; Zim-

bility made by school staff, parents, or the student.

merman, 2013).

Schools must have established standards and proce-

For example, a child with cerebral palsy whose con-

dures for student evaluation and eligibility determi-

dition does not interfere with progress in a general

nation, including whether the child needs services

education curriculum but who does require special

under Section 504 because of a perceived or re-

equipment to access the education would qualify for

corded disability which affects major life functions.

a 504 Plan (Davidson Institute, 2009). Other medi-

The 504 team includes those who are knowledge-

cal diagnoses that would be covered under Section

able about the student, disability, and the process to determine both the student’s eligibility for accomcontinued next page

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modations and the accommodations that are neces-

tional time for tests-taking. Students who qualify for

sary (Gibbons, 2013). If appropriate, the team will

a 504 plan with access accommodations usually re-

identify and implement 504 services, accommoda-

ceive a regular education and a regular curriculum

tions and/or modifications.

(Smith-Michaels, 2008).

Although this is a Federal law, no Federal funding

The term “disabled� applies to students eligible for

or state allocations are mandated for Section 504.

IDEA services and Section 504 services. All indi-

Therefore all costs for reasonable accommodations

viduals who are disabled under IDEA are also con-

are funded by the school district/educational entity

sidered to be disabled and protected under Section

(Zimmerman, 2013).

504. But not the reverse: not all individuals who

General comparisons/differences between IDEA/IEP Plan and Section 504 Plan Commenting on all the differences between the two

have been determined to be disabled under section

laws and their processes is beyond the scope of this article. However, a few comparisons/differences are listed in Table 2 regarding oversight, regulations, funding, entitlement, reciprocity, tracking, type of education, eligibility, and applicable disabilities. Additionally, the reader is referred to the links listed in Table 3 for additional information on comparisons

and differences.

504 are considered disabled under IDEA. (Fig. 1) IDEA limits eligibility to only students with certain types of disabilities. The student qualifying for special education services must meet very specific requirements as specified in the law. The disability generally affects the individual in the educational setting. In contrast, Section 504, a non-discrimFigure 1. All disabled children can all be eligible for a 504 Plan, but not all disabled children are eligible for IDEA

Disabled Children

Fundamentally, an IEP plan adds services to provide compensatory strategies, tactics, and program modifications so the student can benefit from the educational experience; a 504 plan removes barriers to foster equality in order for the student to access the educational experience.

Eligible for IDEA

Students who qualify for special education assistance

Eligible for 504 Services

can receive a modification in the curriculum, standards, and/or performance evaluations via specialized instruction or service under IDEA, e.g., addi-

AANLCP Journal of Nurse Life Care Planning

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ination law, protects all students who have a record

many specific conditions. Section 504 and the ADA

of any physical or mental impairment that limits one

are antidiscrimination laws and provide no funding.

or more major life activities even if special educa-

Implications for the Life Care Planning Process and Development Records: When requesting records from the educa-

tion is not needed. For example a student with juvenile arthritis would qualify under Section 504 but

tional institution, it is important to know about the

not necessarily IDEA. The child may need adaptive

various types and sources of school records. Educa-

aids to assist with noted taking or writing because of

tional records can include (limited example):

painful joints but may not need special education

• cumulative school record

assistance or specialized instruction under IDEA

•discipline files

(Zimmerman, 2013).

Section 504 prohibits discrimina-

grant statute with

tion on the basis of disability in

ceive Federal financial assis-

ment of Education. Title II prohibits discrimination on

•medical records •SST records •psychological assessments

receipt of Federal funds

programs or activities that re-

tance from the U.S. Depart-

•school health assessments

IDEA is a

•mental health records

subject to many specific

•special education files

conditions. Section 504 and the ADA are antidiscrimination

the basis of disability by state and local governments. The Office of Special Education and Re-

laws and provide no funding.

habilitative Services (OSERS), also a component of the U.S. Department of Edu-

•records from other agencies and professionals providing services Regardless of source, student records are confidential under

Family Educational and Privacy

Ꮬ

Act (FERPA) and Health Insurance Portability and Accountability Act (HIPAA)

cation, administers the Individuals with Disabilities

protections. To ensure that all pertinent records

Education Act (IDEA), a statute which funds special

are made available to the Life Care Planner, it is

education programs.

prudent to have a signed release from the parent

Each state educational agency is responsible for ad-

or legal guardian. Direct communications to the

ministering IDEA within the state and distributing

school district superintendent, the director of

the funds for special education programs. IDEA is a

special education, and any state, county or local

grant statute with receipt of Federal funds subject to

governmental agencies of record. continued next page

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Services included: It is important for the Life Care

A therapy provider outside of the educational system

Planner to understand that services provided by the

may make assessment-based recommendations as to

entity(s) funding the IEP or accommodations for a

the child’s needs for services that are beyond what

504 are usually only those deemed to be education-

the educational entity deems to be educationally

ally necessary for the child to attend school and re-

relevant.

ceive FAPE. Services provided by the funding entity

For example, a medically-assigned PT may recom-

do not usually include all a child’s day-to-day needs.

mend individualized one-hour therapy sessions three

Generally, if an educationally-necessary service can-

times a week to work on movement disorder chal-

not be avoided while the child is at school, the edu-

lenges. However, the educational PT determines that

cational funding entity will incorporate it into the

to provide FAPE, the child only needs one group

child’s school day and provide it. For example, con-

session a week. Therefore, the Life Care Planner

sider a child who needs supplemental nutrition

must be alert to identify these differences, and incor-

though a gastrointestinal tube or port. If the supple-

porate them appropriately into the Life Care Plan.

ment can be administered before or after school, then

Equipment: If the IEP team determines that a child

the school will likely not assume responsibility for

with a movement disorder needs a stander or other

providing a feeding while the child is at school, even

piece of equipment during the school day in order

though it may be more convenient for the caregivers

for the child to receive FAPE, that piece of equip-

and can be argued that it is needed for sustenance. If,

ment should be at school. Since the child most likely

however, the feeding frequency is such that a dose

needs that same piece of equipment at home, and if it

must be given during the school day in order for the

is not practical for family to bring that piece of

child to attend school, then that service most likely

equipment to and from school each day, the school

will be part of the child’s plan (Cosby, 2003).

would most likely purchase that piece of equipment

This approach often also applies to therapy services

for the child’s use while at school (IDEA 2013, Title

such as speech and language, occupational therapy,

34 C.F.R §300.105).

and physical therapy. However, need, frequency, or

It is important for the Life Care Planner to under-

intensity of a service may not be as obvious as with a

stand that the equipment or devices that are provided

bodily function need such as feeding or nutritional

by the funding entity identified in the IEP for ac-

supplementation. Therefore, the team determines the

commodation remain the property of the funding en-

need, frequency and intensity of services to decide

tity. Further, the equipment does not necessarily fol-

what is necessary to meet the child’s FAPE.

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low the child home from school or as the child transi-

There may also be situations where the IEP team will

tions from one educational level to another. One ex-

recommend a piece of adaptive equipment that meets

ception may apply if the school district is unified.

the criterion for the child to attend school but is not

It is important to keep this in mind while recommend-

necessarily in alignment with the plan of care recom-

ing equipment (adaptive /assistive devices) needs and

mended by assessment professionals outside the edu-

costs for the Life Care Plan. Just because the child has

cational system. Depending on the individual circum-

a piece of equipment provided by the educational en-

stances, the Life Care Planner may want to consider

tity in one setting does not necessarily mean it will be

including educational consultant services as part of

there as the child transitions from one educational

the plan to properly advocate on behalf of the student

level to another. This could be because a different

and parents as they navigate disability services op-

funding source applies, or it could be determined that

tions that may be available within the educational sys-

it is no longer educationally needed.

tem. The Life Care Planner needs to be alert to these potential differences, and incorporate them appropriately into the Life Care Plan.

Table 1: Selected Definitions and Services Under IDEA Relevant to Pediatric Life Care Plans Source: IDEA, 2013, Title 34 C.F.R §300 Accessed February 17, 2013 from GPO Access (c) Definitions of disability terms.

Title 34 C.F.R §300.8 (c)

The terms used in this definition of a child with a disability are defined as follows: “1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences (ii) Autism does not apply if a child's educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in paragraph (c)(4) of this section. (iii) A child who manifests the characteristics of autism after age three could be identified as having autism if the criteria in paragraph (c)(1)(i) of this section are satisfied.

(2) Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.

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3) Deafness means a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance.

(4)(i) Emotional disturbance means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance: (A) An inability to learn that cannot be explained by intellectual, sensory, or health factors.

(B) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers.

(C) Inappropriate types of behavior or feelings under normal circumstances.

(D) A general pervasive mood of unhappiness or depression.

(E) A tendency to develop physical symptoms or fears associated with personal or school problems. (ii) Emotional disturbance includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have an emotional disturbance under paragraph (c)(4)(i) of this section.

(5) Hearing impairment means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child's educational performance but that is not included under the definition of deafness in this section.

(6) Mental retardation means significantly subaverage general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child's educational performance.

(7) Multiple disabilities means concomitant impairments (such as mental retardationblindness or mental retardation-orthopedic impairment), the combination of which causes such severe educational needs that they cannot be accommodated in special education programs solely for one of the impairments. Multiple disabilities does not include deaf-blindness.

(8) Orthopedic impairment means a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by a congenital anomaly, impairments caused by disease (e.g., poliomyelitis, bone tuberculosis), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).

(9) Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—

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(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and (ii) Adversely affects a child's educational performance.

(10) Specific learning disability —(i) General. Specific learning disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. (ii) Disorders not included. Specific learning disability does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

(11) Speech or language impairment means a communication disorder, such as stuttering, impaired articulation, a language impairment, or a voice impairment, that adversely affects a child's educational performance.

(12) Traumatic brain injury means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. Traumatic brain injury applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual, and motor abilities; psychosocial behavior; physical functions; information processing; and speech. Traumatic brain injury does not apply to brain injuries that are congenital or degenerative, or to brain injuries induced by birth trauma.

(13) Visual impairment including blindness means an impairment in vision that, even with correction, adversely affects a child's educational performance. The term includes both partial sight and blindness.” Title 34 C.F.R §300.8 (c) Developmental Delays Title 34 C.F.R §300.8 (b) GPO Access

“Developmental delays, as defined by the State and as measured by appropriate diagnostic instruments and procedures, in one or more of the following areas: Physical development, cognitive development, communication development, social or emotional development, or adaptive development; and (2) Who, by reason thereof, needs special education and related services”. Title 34 C.F.R §300.8 (b)

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Least Restrictive IDEA requires that children with disabilities be educated with children who are not Environment disabled to the extent possible. This means that the child should be placed into a mainstream class and only be removed if the use of aids and other services can’t provide satisfactory results. Potential education placements from least restrictive to most restrictive are: 1. general education without services 2. general education with push in services 3. resource specialist program (pull out services) 4. special day class 5. non-public school 6. day treatment center 7. residential treatment center 8. home hospital Special Education Advisor: Accessed February 18, 2013 http://www.specialeducationadvisor.com/special-education-laws/individuals-with-disabi lities-education-act-idea/ Related Services “Related services means transportation and such developmental, corrective, and other Title 34 C.F.R supportive services as are required to assist a child with a disability to benefit from special education, and includes speech-language pathology and audiology services, in§300.34 terpreting services, psychological services, physical and occupational therapy, recreaGPO Access tion, including therapeutic recreation, early identification and assessment of disabilities in children, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services for diagnostic or evaluation purposes. Related services also include school health services and school nurse services, social work services in schools, and parent counseling and training”. Title 34 C.F.R §300.34 Assistive Technol- “Assistive technology service means any service that directly assists a child with a disogy Service ability in the selection, acquisition, or use of an assistive technology device. The term includes— Title 34 C.F.R §300.6 GPO Access

(a) The evaluation of the needs of a child with a disability, including a functional evaluation of the child in the child's customary environment (b) Purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices by children with disabilities; (c) Selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing assistive technology devices; (d) Coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs; (e) Training or technical assistance for a child with a disability or, if appropriate, that child's family; and

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Assistive Technol- (f) Training or technical assistance for professionals (including individuals providing eduogy Service cation or rehabilitation services), employers, or other individuals who provide services to, employ, or are otherwise substantially involved in the major life functions of that child”. Title 34 C.F.R §300.6 Title 34 C.F.R §300.6 GPO Access Assistive Technol- “Assistive technology device means any item, piece of equipment, or product system, ogy Device whether acquired commercially off the shelf, modified, or customized, that is used to Title 34 C.F.R increase, maintain, or improve the functional capabilities of a child with a disability. The term does not include a medical device that is surgically implanted, or the replacement §300.5 of such device”.

GPO Access

Table 2: Selected IDEA and Section 504 Regulation and Support Plan Comparisons. Source: Adapted from:

Zimmerman, B (2013). Student health and education plans. In J. Selekman (Ed.), School Nursing: A comprehensive text (2nd ed., pp. 311-312). Philadelphia: F.A. Davis; The Goldberg Center for Educational Planning, 2007. Alex Smith-Michaels 2008; Accessed February 17, 2013 from www.advancingmilestones.com/PDFs/m_resources_504-vs-IEP.pdf

IDEA - IEP

Section 504 Plan Section 504 - Civil Right Law

Oversight

IDEA Part 300 – Education Law An Office of Special Education. Provides for due process and hearings/ grievances; many protections for safeguarding the procedure for the IEP (Goldberg, 2007).

The U.S. Department of Education (ED) enforces Section 504 in programs and activities that receive funds from ED. Recipients of these funds include public school districts, institutions of higher education, and other state and local education agencies. http://www2.ed.gov/about/offices/list/ocr/docs/ed lite-FAPE504.html http://www.gpo.gov/fdsys/search/pagedetails.acti on?st=collection%3ACFR+and+content%3A%28Title +34+part+104%29&collection=CFR&historical=fals e&granuleId=CFR-2012-title34-vol1-part104-appA &packageId=CFR-2012-title34-vol1

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Regulations

Funding

Entitlement

Title 34 C.F.R §300 (2012)

Title 34 C.F.R §104 (2012)

Regulations for IDEA Part B are codified in the Code of Federal Regulations (CFR), Title 34, Part 300 (commonly referred to as 34 CFR pt. 300). Unlike the regulations published in the Federal Register http://nichcy.org/wp-content /uploads/docs/IDEA2004reg ulations.pdf, the CFR is continually updated. The most current version, of IDEA’s Part B regulations can be accessed in the CFR at : GPO Access

http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-v ol1/pdf/CFR-2012-title34-vol1-part104.pdf

Federal funding

No Federal funding

Right to a Free and Appropriate Public Education for students with special needs that emphasizes special education and related services designed to meet the student’s unique needs and prepare the student for employment and independent living.

When the child graduates from high school with a regular diploma or reaches the age of 22, the child's entitlement to rights under IDEA ends. IDEA rights usually do not follow the child into college or the workplace.

Reciprocity

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A student on an IEP covered under education law IDEA is automatically covered under Section 504

http://www.gpo.gov/fdsys/search/submitcitation.a ction?publication=CFR ED has published a regulation implementing Section 504 (34 C.F.R. Part 104) and maintains an Office for Civil Rights (OCR), with 12 enforcement offices and a headquarters office in Washington, D.C., to enforce Section 504 and other civil rights laws that pertain to recipients of funds. http://www2.ed.gov/about/offices/list/ocr/docs/ed lite-FAPE504.html

Prohibits discrimination on the basis of a handicap. Deals with providing reasonable accommodations to students with disabilities that substantially limits participation or access to the school, education program or extracurricular activities.

Protection is given to a student who has a physical or mental impairment that substantially limits major life activity.

Section 504 provides protections against discrimination after the child leaves public school.

A student covered under Section 504 is not necessarily covered under IDEA.

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Progress reporting is required.

No progress report required.

Type of Education (special ed or regular ed)

IEP plan or curriculum is essentially different from what one’s peers utilize. It is fundamentally a special education program. Student requires specially designed instruction with modification of actual program or curriculum material, and related services to received educational benefit.

Fundamentally a general education program with supports/accommodations extended to access standard program or curriculum materials.

Eligibility

Only specified disability categories: Part B of IDEA requires participating states to ensure that a free appropriate public education (FAPE) is made available to eligible children with disabilities in mandatory age ranges residing in the state. To be eligible, a child must be evaluated as having one or more of the disabilities listed in IDEA and determined to be in need of special education or related services in order to receive an appropriate education.

Title 34 C.F.R §300.8 GPO Access

Tracking

Less discriminatory: The ED Section 504 regulation defines a person with a disability as “any person who: (i) has a physical or mental impairment which substantially limits one or more major life activities, (ii) has a record of such an impairment, or (iii) is regarded as having such an impairment.” Title 34 C.F.R §104.3(j) The Section 504 regulation uses the term “handicap.” However, Congress has amended the Rehabilitation Act of 1973 and has replaced the term “handicap” with the term “disability.” The terms “handicap” and “disability” have the same meaning. http://www2.ed.gov/about/offices/list/ocr/docs/ed lite-FAPE504.html http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-v ol1/pdf/CFR-2012-title34-vol1-part104.pdf

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(j)(2)(i) Physical or mental impairment means (A) any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive, digestive, genito-urinary; hemic and lymphatic; skin; and endocrine; or (B) any mental or psychological disorder, such as mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities.

Applicable Disabilities

Disabilities specified in IDEA Part B include: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, a serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairment. Title 34 C.F.R §300.8(a); : GPO Access Additionally, states and local education agencies (LEAs) may adopt the term “developmental delay” for children aged 3 through 9 (or a subset of that age range) who are experiencing a developmental delay as de fined by the state and need special education and related services. Title 34 C.F.R §300.8(b) : GPO Access

(ii) Major life activities means functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working. (iii) Has a record of such an impairment means has a history of, or has been misclassified as having, a mental or physical impairment that substantially limits one or more major life activities. (iv) Is regarded as having an impairment means (A) has a physical or mental impairment that does not substantially limit major life activities but that is treated by a recipient as constituting such a limitation; (B) has a physical or mental impairment that substantially limits major life activities only as a result of the attitudes of others toward such impairment; or (C) has none of the impairments defined in paragraph (j)(2)(i) of this section but is treated by a recipient as having such an impairment. Title 34 C.F.R §104.3(2) http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-v ol1/pdf/CFR-2012-title34-vol1-part104.pdf “The regulatory provision does not set forth an exhaustive list of specific diseases and conditions that may constitute physical or mental impairments because of the difficulty of ensuring the comprehensiveness of such a list.” http://nichcy.org/laws/section504 “This list is not exhaustive. Other functions can be major life activities for purposes of Section 504. In the Amendments Act…Congress provided additional examples of general activities that are major life activities, including eating, sleeping, standing, lifting, bending, reading, concentrating, thinking, and communicating. Congress also pro-

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vided a non-exhaustive list of examples of “major bodily functions” that are major life activities, such as the functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions… the Section 504 regulatory provision’s list of examples of major life activities is not exclusive, and an activity or function not specifically listed in the Section 504 regulatory provision can nonetheless be a major life activity”. http://nichcy.org/laws/section504

Applicable Disabilities, cont.

Table 3 Additional resources Disability and Special Education Acronyms http://nichcy.org/families-community/acronyms National Dissemination Center for Children With Disabilities: information on IDEA and Section 504 http://nichcy.org/ IEP Advisor http://www.specialeducationadvisor.com/special-education-laws/individuals-with-disabilities-education-actidea/ Understanding the differences between IDEA and Section 504. http://www.ldonline.org/article/6086 Key differences between 504 and IDEA http://www.wrightslaw.com/howey/504.idea.htm About disability discrimination and your rights. http://www2.ed.gov/policy/rights/guid/ocr/disability.html Find the OCR regional office nearest you.

504 Frequently Asked Questions.

Sample 504 plans

http://wdcrobcolp01.ed.gov/CFAPPS/OCR/contactus.cfm

http://specialchildren.about.com/od/504s/qt/504faq.htm

http://specialchildren.about.com/od/504s/qt/sample504.htm

Technical assistance documents can be helpful when disability is involved. http://www2.ed.gov/about/offices/list/ocr/disabilityresources.html Locating an Educational Consultant http://www.iecaonline.com/learning.html; http://www.iecaonline.com/cfm_PublicSearch/pg_PublicSearch.cfm?mode=entry

References Cosby, M. (2003). Supreme court decision Cedar Rapids v. Garret F.: Impact on school nursing and life care planning. Journal of Life Care Planning, 2, 205-214.

Davidson Institute ( 2009). Special education process: IEP vs. 504 Plan. Retrieved February 17, 2013 from http://www.davidsongifted.org/db/Articles_id_10671.aspx.

Gibbons, L.J., Lehr, K., & Selekman, J. (2013). Federal laws protecting children and youth with disabilities in the schools. In J. Selekman (Ed.), School Nursing: A comprehensive text (2nd ed., pp. 257-283). Philadelphia: F.A. Davis.

Goldberg Center for Educational Planning (2007). A support plan comparison: IEP vs. 504. Retrieved February 17, 2013 from http://www.edconsult.org/Portals/41331/docs/Plan%20Comparison%20IEP%20vs%20504.pdf Individuals with Disabilities Education Act (IDEA) of 2004, (updated as of February 14, 2013) 20 U.S.C. §1400; Title 34 C.F.R § 300; Retrieved February 17, 2013 from GPO Access; http://www.ecfr.gov/cgi-bin/text-idx?c=ecfr&sid=96025ad40230ae0f4a530ec51d0519ca&rgn=div5&view=text&node=34:2.1.1.1.1&i dno=34

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National Dissemination Center for Children with Disabilities (NICHCY) Accessed February 17, 2013. http://nichcy.org/ .

Section 504 of Rehabilitation Act of 1973 (updated as of July 1, 2012); 29 U.S.C. § 794 et sec; 34 C.F.R., Part 104. Accessed February 17, 2013 from http://www.gpo.gov/fdsys/pkg/CFR-2012-title34-vol1/pdf/CFR-2012-title34-vol1-part104.pdf Smith-Michaels, A. (2008). What is the difference between an IEP and a 504, Accessed February 17, 2013 from www.advancingmilestones.com/PDFs/m_resources_504-vs-IEP.pdf Special Education Advisor accessed February 18, 2013 http://www.specialeducationadvisor.com/special-education-laws/individuals-with-disabilities-education-act-idea/ U.S. Department of Education. (2010) Free and appropriate public education for students with disabilities: Requirements under section 504 of the Rehabilitation Act of 1973. Accessed http://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html Zimmerman, B. (2013). Student health and education plans. In J. Selekman (Ed.), School Nursing: A comprehensive text (2nd ed., pp.

284 - 314). Philadelphia: F.A. Davis.

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From Technology Corner Environmental Control Units (part 2) Keith Sofka ATP (retired) and Penelope Caragonne, MSW, Ph.D, CLCP In the previous

Other tasks that are

column (JNLCP XII.4)

beyond what is con-

we covered the basics of

sidered ordinary en-

environmental control.

vironmental control

This column will expand

fall under the more

upon these initial princi-

general category of

ples and will begin to

Electronic Aids for

describe the specific ways that a person with dis-

Daily Living (EADL). These can include using

abilities can achieve access to many crucial and life-

an e-reader, playing computer games, and other

enriching tasks.

computer functions like using e-mail and explor-

Important Issues Identifying the tasks that the individual would like to

ing the Internet. Caution should be used when

perform is the first and easiest issue to define. Most

support equipment or other emergency functions

people, even those with full time care givers, would

are included in the list of tasks. ECUs function

like to be able to perform at least some tasks inde-

well but should never be relied upon to perform

pendently. Tasks most commonly desired for use

critical or emergency tasks.

with an ECU are: • operating a hospital bed • using the telephone to make and receive calls • turning on room lights as needed, calling or alerting a care giver • operating the television, DVD player and other home entertainment equipment • opening doors • controlling the room or house temperature.

defining the tasks to be performed so that no life

Second, a means of completing the task should be identified. The choices are usually between using a

Keith Sofka has practiced the provision of assistive technology services for the past 30 years. Mr. Sofka provides consultation to hundreds of companies, schools, Government Agencies and individuals. Penelope Caragonne has lectured extensively on longterm planning and case management as a model for comprehensive service delivery both within and outside a litigation context.

Together as Caragonne and Associates, they offer job site modification, educational access services, and forensic assessment,consultation, and testimony. They may be contacted at Mail@Caragonne.com or 866-285-0665 toll-free.

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question or using an all-in-one ECU to control mul-

Individual controls Alternatively, tasks can be managed using discrete

tiple devices. There are many alternative ways to

lower-tech solutions for each. This offers similar

perform tasks, more than it would be possible to ex-

levels of control without the disadvantages of an all-

plore here. However, here are some of the more

in-one device.

common ones.

For instance, a speaker phone

All-in-one ECUs

or other device can often be

These use different means to perform different tasks.

controlled with a mouth

Electrical devices and lights use a radio frequency

stick docked in a nearby

controller to send radio signals through house wiring

holder. For many

to a receiver that controls the light or other device.

people with disabili-

These are most commonly known as X10 controls

ties, this solution

after the most well known provider. X10 controls are

works very well and

also used in home automation by able-bodied indi-

is a reliable and inexpensive solution for telephone

viduals to provide a similar central point of control

access.

for a home. Since they are used in the general con-

In some cases a mouth stick can also be used as a

sumer market, X10 controls are readily available and

TV control. The remote and the mouth stick holder

relatively inexpensive. One controller is needed for

can be mounted on the wheelchair or in a location

each device to be automated.

where the television is located close to where the

Televisions and other devices with remote controls

individual always sits to watch. This offers an easy-

use infrared devices (IR). Depending upon the ECU,

to-use and reliable method of television control.

the ability to control IR may be built in or you may

Replacing wall switches with occupancy sensor

have to purchase a separate module.

switches (motion detectors) will allow a person to

A speaker phone can be built in to an ECU or may

simply enter the room and the lights will turn on.

require an accessory product.

These switches are inexpensive, about $20.00 each.

discrete device that provides access to each task in

The above examples are all high-tech and have the same vulnerability: since one device controls all of the devices, failure of the control device will result in complete loss of ECU access.

Similar sensing switches are available for table lamps and for control of other electrical devices.

Interfaces Interfaces are the tools that allow the individual to continued next page

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activate controls. They can be as simple as a simple switch and as complex as speech recognition.

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Location, location, location Most people will want to control their environment from their wheelchair in

Switches can vary from a

the daytime, and from bed

sip-and-puff sensor to a

at night. This can be a

switch that detects an eye

problem for some all-in-

blink. A touch screen

one ECUs that require

could be used by someone

hard-wired connections for power or other controls. Low-tech solutions with some hand

are generally located at the point of use and so do

range of motion.

not have this limitation.

Head tracking or

Individual factors The fifth issue is one of the most important: the indi-

eye tracking systems can be customized to control tasks. Voice

vidual’s ability to learn and process complex infor-

control (speech recognition) is another possibility for

mation to use an ECU.

access.

Most all-in-one ECUs are comparable to computers

It is even possible, using additional electronics, to

in complexity; if individuals can use a computer they

use the control method for a power wheelchair to

can, with training, be able to use most ECUs. Learn-

operate an ECU. This is particularly useful for

ing or memory difficulties will require careful plan-

someone that has very complex seating and control

ning and evaluation to see whether the ECU system

needs since separate equipment is not needed for po-

you introduce will be useable; some require good

sitioning and control of the ECU. This option is of-

cognitive function to learn and use successfully.

fered by most of the high-end wheelchair manufacturers and should be explored as a part of the wheelchair fitting.

Low-tech controls are generally much simpler and it’s easier to become a competent user. For instance, if the individual can use a mouth stick, using a

Mouth sticks, head pointers, motion sensors, and

speaker phone will be easy: just press the speaker

simple switches that are well positioned to take ad-

and number keys.

vantage of the movements available to the individual are effective lower-tech options for some persons.

Designing and implementing reliable environmental control systems requires considerable experience. continued next page

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Look for specialists who design these systems to

day. At night, they remain accessible by parking the

assist you in developing a cost for a particular indi-

individual’s wheelchair next to the bed, in line-of-

vidual.

sight to the television. All that would remain for

Additional Ideas for Environmental Control Sometimes a combination of ECU devices will be

complete nighttime access would be another switch

best. For example, a selection of motion sensor

Tablets and smart phones

lights, a mouth stick and

These ubiquitous devices are enjoying wider use as

speaker phone, and a Re-

assistive technology. (see JNLCP XI.1, p.239, Ed.)

lax II controller can ad-

These devices have drastically changed the augmen-

dress a wide range of

tative communications device market since these

needs. The Relax II is a

devices are small, light, easy to mount or carry, and

somewhat more high-tech

are much cheaper than dedicated communication

way to control lights and television and other infra-

costs and increase in versatility is becoming avail-

red (IR) devices. Small, portable and reliable, it uses

able to people who experience physical access ob-

scanning access and controls up to four IR devices

stacles. The Tecla Shield connects to either stand-

and ten X10 Radio Frequency (RF) modules. (A Re-

alone switches or a power wheelchair controller. It

placed in the bed within easy reach.

lax Mini is available that just controls IR devices.)

Since the Relax Mini and Relax II are battery-operated, they can be easily wheelchair mounted and follow the individual all

then connects to an iPad, iPhone or an Android tablet or phone and provides both selecting and launching applications.

Since there are several home automation applications and compatible hardware that will control X10 devices, this simple device can be used for most continued next page AANLCP Journal of Nurse Life Care Planning

I S S N 1 9 4 2 - 4 4 6 95050!

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Spring 2013

! peer-reviewed excellence in life care planning since 2006

Vol. XIII No. 1

ECU purposes. If you use the iPhone, then you can

All-In-One ECUs: http://convergenceconcepts.com

have all usual ECU controls plus the ability to make

http://asi-autonome.com/index.html

and receive phone calls. Add an infrared (IR) module

http://breakboundaries.com/

to your iPhone and you can control televisions, DVD

The Tecla Shield: http://komodoopenlab.com/tecla/

players, and other IR-controlled devices. Alternative

Home Automation:

access methods like the Tecla Shield are still in the

http://www.homeauto.com/main.asp

early stages of development but their reduced costs

http://www.x10.com/

and availability make it likely that the future of envi-

http://www.homecontrols.com/

ronmental control lies in this direction.

Wheelchair Based ECUs:

Resource List for Environmental Control

http://www.ottobock.com/cps/rde/xchg/ob_co

Mouth sticks and Head Pointers:

m_en/hs.xsl/1301.html

http://www.pattersonmedical.com General Information about ECUs: http://www.ablenetinc.com

Nursing Diagnoses to Consider

NANDA-I Nursing Diagnosis, 2012-2014

‣ Deficient Diversional Activity Decreased stimulation from (or interest or engagement in) recreational or leisure activities (Domain 1, Health Promotion; Class 1, Health Awareness) ‣ Impaired Physical Mobility Limitation in independent purposeful physical movement of one or more extremities (Domain 4, Activity/ Rest; Class 2: Activity/Exercise) ‣ Impaired Verbal Communication: Decreased, delayed, or absent inability to receive, process, transmit, and/or use a system of symbols (Domain 5,Perception/Cognition; Class 4: Communication) ‣ Risk for Compromised Human Dignity: At risk for perceived loss of respect and honor (Domain 6, Self-Perception; Class 1: Self-Concept) ‣ Risk for powerlessness: At risk for perceived lack of control over a situation and/or one’s ability to significantly affect an outcome (Domain 6, Self-Perception; Class 1: Self-Concept) ‣ Readiness for Enhanced Coping (Domain 9, Coping and Stress Tolerance; Class 2, Coping Responses)

Ꮬ AANLCP Journal of Nurse Life Care Planning

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