Transition and Personal Care Services

Transition and PersonalTransition and PersonalCare ServicesCare Services

December 1, 2008December 1, 2008

University of MontanaUniversity of Montana

Rural Institute Transition ProjectsRural Institute Transition Projects

http://ruralinstitute.umt.edu/transitionhttp://ruralinstitute.umt.edu/transition

Introducing…Introducing…

Darren LarsonDarren Larson

Independent Living SpecialistIndependent Living Specialist

Summit Independent Living CenterSummit Independent Living Center

UM Graduate in Political ScienceUM Graduate in Political Science

MTMT--TIRC Advisory Board memberTIRC Advisory Board member

[email protected]@summitilc.org

Personal CarePersonal CareServicesServicesServicesServices

Understand the BasicsUnderstand the Basics

Establish a ProfessionalEstablish a ProfessionalRelationship with Your CaregiverRelationship with Your Caregiver

Understanding the BasicsUnderstanding the BasicsThree RealmsThree Realms

Need toNeed to BeBe Medicaid EligibleMedicaid Eligible

State PlanState Plan State PlanState Plan

Home & Community Based ServicesHome & Community Based Services

Big Sky BonanzaBig Sky Bonanza

State PlanState Plan

AgencyAgency--Based or SelfBased or Self--DirectDirect

BasicBasic personal care in areas of personalpersonal care in areas of personalassistance, health maintenance activities,assistance, health maintenance activities,assistance, health maintenance activities,assistance, health maintenance activities,and household/escort needsand household/escort needs

Bathing, dressing, toileting, meal prep,Bathing, dressing, toileting, meal prep,laundry, etc.laundry, etc.

Home & Community BasedHome & Community BasedServicesServices

Waiver ProgramWaiver Program

Available Across MontanaAvailable Across Montana

Needs BasedNeeds Based Needs BasedNeeds Based 215 slots215 slots

Waiting listWaiting list

Shared BudgetShared Budget 4.5 Million4.5 Million

Ventilators are excludedVentilators are excluded

HCBS Additional ServicesHCBS Additional Services

Adult Residential LivingAdult Residential Living Adult Day HealthAdult Day Health Case ManagementCase Management Chemical DependencyChemical Dependency

CounselingCounseling DieticianDietician

PsychosocialPsychosocialConsultationConsultation

Respiratory TherapyRespiratory Therapy Respite CareRespite Care Special Child CareSpecial Child Care TransportationTransportation DieticianDietician

EnvironmentalEnvironmentalAdaptationsAdaptations

Habilitation ServicesHabilitation Services Homemaker ServicesHomemaker Services NutritionNutrition Personal AssistancePersonal Assistance PERSPERS Private Duty NursingPrivate Duty Nursing

TransportationTransportation Therapies (OT, PT,Therapies (OT, PT,

Speech)Speech) Specially TrainedSpecially Trained

AttendantAttendant Specialized medicalSpecialized medical

equipment and suppliesequipment and supplies Services for IndividualsServices for Individuals

with Traumatic Brainwith Traumatic BrainInjuryInjury

Big Sky BonanzaBig Sky Bonanza

State Plan and HCBS combinedState Plan and HCBS combined

NeedsNeeds BasedBased 13 slots13 slots

Serving several western countiesServing several western counties

Personal BudgetPersonal Budget You control your own budgetYou control your own budget

Services are calculated into a dollar amountServices are calculated into a dollar amount

Flexible spending optionsFlexible spending options

Steps to PrepareSteps to Prepare

1.1. If you haven’t, apply for Medicaid at local Office ofIf you haven’t, apply for Medicaid at local Office ofPublic AssistancePublic Assistance

2.2. Make a referral into Mountain Pacific Quality HealthMake a referral into Mountain Pacific Quality HealthFoundation for a home visit and authorizationFoundation for a home visit and authorization 11--406406--443443--40204020 11--406406--443443--40204020

3.3. Research agenciesResearch agencies thatthat offer Personal Assistanceoffer Personal AssistanceServices in your communityServices in your community

4.4. Call and ask questions of the agency you areCall and ask questions of the agency you areinterested ininterested in Upon choosing an agency you will need to fill out their formsUpon choosing an agency you will need to fill out their forms Be ready to define your need for personal care tasks, healthBe ready to define your need for personal care tasks, health

maintenance activities, and household/escort needsmaintenance activities, and household/escort needs

5.5. Complete PAS needs inventory prior to home visitComplete PAS needs inventory prior to home visit

Consumer Profile NeedsConsumer Profile NeedsInventoryInventory

Document yes or no and how long for each taskDocument yes or no and how long for each task

Do you have difficulties taking a shower?Do you have difficulties taking a shower? Can you dress yourself?Can you dress yourself? Do you need assistance with an exercise program?Do you need assistance with an exercise program? Do you need assistance with an exercise program?Do you need assistance with an exercise program? Can you groom yourself?Can you groom yourself? Do you have any difficulties getting to and using theDo you have any difficulties getting to and using the

bathroom?bathroom? Can you get in or out of your bed or chair?Can you get in or out of your bed or chair? Are you able to walk without help?Are you able to walk without help? Do you need assistance with fixing your meals?Do you need assistance with fixing your meals? Do you need assistance with eating?Do you need assistance with eating?

Consumer Profile NeedsConsumer Profile NeedsInventory (cont)Inventory (cont)

Document yes or no and how long for each taskDocument yes or no and how long for each task

Do you need help with a bowel treatment?Do you need help with a bowel treatment? Do you need help with wound care?Do you need help with wound care? Do you need help with urinary systemDo you need help with urinary system

management?management? Do you need help with administration ofDo you need help with administration of

medicine?medicine? Can you clean your home?Can you clean your home? Can you do your laundry?Can you do your laundry? Do you need assistance with shopping?Do you need assistance with shopping?

Transitioning to a NewTransitioning to a NewWay of LifeWay of Life

It can be frightening and uncomfortable to haveIt can be frightening and uncomfortable to havepeople you are notpeople you are not usedused to assist you with yourto assist you with yourpersonal carepersonal care

This is NATURALThis is NATURAL This is NATURALThis is NATURAL

The feeling will not last and you will have theThe feeling will not last and you will have theopportunity to meet some pretty cool peopleopportunity to meet some pretty cool people

Don’t allow this to hold you back fromDon’t allow this to hold you back fromachieving yourachieving your goalsgoals

Relationship DynamicsRelationship Dynamics

Yes, a relationship is a twoYes, a relationship is a two--wayway ventureventure

But you are only responsible for and canBut you are only responsible for and can But you are only responsible for and canBut you are only responsible for and canonly control youronly control your actionsactions

Be aware that your attitude can and oftenBe aware that your attitude can and oftendoes dictate the attitudes of othersdoes dictate the attitudes of others

How to Develop anHow to Develop anEffective RelationshipEffective Relationship

Be yourselfBe yourself

Be assertive in communicating yourBe assertive in communicating yourneedsneedsneedsneeds

Take time to get to knowTake time to get to know your personalyour personalcarecare attendantattendant

Respect boundariesRespect boundaries

Be friendlyBe friendly

Dealing with DifficultDealing with DifficultCaregiversCaregivers

Take time to discuss the issueTake time to discuss the issue

If the PCA is agencyIf the PCA is agency--based and discussingbased and discussingthe problem doesn’t resolve the issue, thenthe problem doesn’t resolve the issue, thentalk to their supervisortalk to their supervisortalk to their supervisortalk to their supervisor

If all else fails, move onIf all else fails, move on

There are mostly good and competentThere are mostly good and competentcaregivers out therecaregivers out there

Life is too short to waste it with those whoLife is too short to waste it with those whoaren’taren’t


Sierra LodeSierra Lode

Alumnus of MYLF; serves on MYLFAlumnus of MYLF; serves on MYLFAdvisory CouncilAdvisory Council

MTMT--TIRC Advisory Board memberTIRC Advisory Board member

Summit Peer Advocacy Training graduateSummit Peer Advocacy Training graduate

Communication Studies student at UMCommunication Studies student at UM

[email protected]@bresnan.net

CHOOSING PERSONAL CARE:CHOOSING PERSONAL CARE:AGENCYAGENCY--BASED CARE VS.BASED CARE VS.SELFSELF--DIRECT CAREDIRECT CARE

When it is time for you to move into the nextWhen it is time for you to move into the nextphase of your life when your parents are nophase of your life when your parents are nolonger your caregivers, there are choices tolonger your caregivers, there are choices tomake regarding those who will provide yourmake regarding those who will provide yourmake regarding those who will provide yourmake regarding those who will provide yourcare…and you are the person who will makecare…and you are the person who will makethose choices.those choices.

Help and guidance from youth with disabilitiesHelp and guidance from youth with disabilitieswho have taken this gigantic step before you canwho have taken this gigantic step before you canbe of real benefit in helping you make informedbe of real benefit in helping you make informeddecisions.decisions.

AGENCYAGENCY--BASEDBASEDPersonal CarePersonal Care

You choose a community personal careYou choose a community personal careagency that manages your personal care.agency that manages your personal care.

The agency provides, employs and trainsThe agency provides, employs and trainsthe personal caregivers.the personal caregivers.

The agency also helps with schedulingThe agency also helps with schedulingyour care and is responsible for all of theyour care and is responsible for all of thepaperwork.paperwork.

SELFSELF--DIRECTEDDIRECTEDPersonal CarePersonal Care

YOU choose who will provide your care.YOU choose who will provide your care. There can be any number of caregivers you chooseThere can be any number of caregivers you choose

for the amount of time you are allotted in your carefor the amount of time you are allotted in your careplan.plan.

A caregiver can be a friend, a relative or someoneA caregiver can be a friend, a relative or someone A caregiver can be a friend, a relative or someoneA caregiver can be a friend, a relative or someoneyou place an ad for.you place an ad for.

YOU are responsible for interviewing, backgroundYOU are responsible for interviewing, backgroundchecks, hiring, training, scheduling, verifying thechecks, hiring, training, scheduling, verifying thecaregiver’s timesheets, and also dismissing acaregiver’s timesheets, and also dismissing acaregiver if they do not work out.caregiver if they do not work out.

An independent living center in your communityAn independent living center in your communitytakes care of paying the caregivers and makes suretakes care of paying the caregivers and makes sureyou do not go over the personal care hours that youyou do not go over the personal care hours that youare assigned.are assigned.

How to choose???How to choose???

If it is at all possible, it is a good idea to tryIf it is at all possible, it is a good idea to tryboth forms of personal care while you areboth forms of personal care while you arestill living at home.still living at home.

Try a couple of months at a time with eachTry a couple of months at a time with each Try a couple of months at a time with eachTry a couple of months at a time with eachservice. That way you will have had enoughservice. That way you will have had enoughtime to see how your care is managed andtime to see how your care is managed andyour parents will also be able to help youyour parents will also be able to help youmake the best decision.make the best decision.

It is good to know you are not locked intoIt is good to know you are not locked intothe care system that you have chosen if,the care system that you have chosen if,after a while, you decide it is not theafter a while, you decide it is not theappropriate system for you.appropriate system for you.

AGENCYAGENCY--BASED PERSONAL CARE:BASED PERSONAL CARE:SOME GOOD ASPECTSSOME GOOD ASPECTS

Agency trains the PCAsAgency trains the PCAs

Agency provides the care attendantsAgency provides the care attendants

“No shows” are handled by the agency“No shows” are handled by the agency “No shows” are handled by the agency“No shows” are handled by the agency

Agency takes care of the paperworkAgency takes care of the paperwork

Agency does the schedulingAgency does the scheduling

Agency care attendants have hadAgency care attendants have hadbackground checksbackground checks

AGENCYAGENCY--BASED PERSONAL CARE:BASED PERSONAL CARE:SOME BAD ASPECTSSOME BAD ASPECTS

PCAs are often latePCAs are often late

You can’t expect the same person all of the timeYou can’t expect the same person all of the time

You may have a personality conflict with anYou may have a personality conflict with anagency PCAagency PCAagency PCAagency PCA

Because of their schedules, agency PCAs areBecause of their schedules, agency PCAs areoften in a hurry and cannot spend the time on aoften in a hurry and cannot spend the time on amore personal levelmore personal level

Because of low pay, there is a high turnover ofBecause of low pay, there is a high turnover ofPCA staffPCA staff

You don’t have complete control of an importantYou don’t have complete control of an importantaspect of your lifeaspect of your life

SELFSELF--DIRECTED PERSONAL CARE:DIRECTED PERSONAL CARE:SOME GOOD ASPECTSSOME GOOD ASPECTS

You choose your own PCAs, which is the ultimateYou choose your own PCAs, which is the ultimatepower of “selfpower of “self--determination”determination”

Your trained PCAs can help with the training of newYour trained PCAs can help with the training of newPCAsPCAs

Your PCA can be a friend, a relative, or anyone ofYour PCA can be a friend, a relative, or anyone of Your PCA can be a friend, a relative, or anyone ofYour PCA can be a friend, a relative, or anyone ofyour choiceyour choice

You can develop a relationship on a more personalYou can develop a relationship on a more personallevellevel

You set up your own schedule for your careYou set up your own schedule for your care You gain confidence in knowing that you have theYou gain confidence in knowing that you have the

control and the independence to govern one of thecontrol and the independence to govern one of themost important aspects of your life…your personalmost important aspects of your life…your personalcarecare

SELFSELF--DIRECTED PERSONAL CARE:DIRECTED PERSONAL CARE:SOME BAD ASPECTSSOME BAD ASPECTS

You are responsible for finding your own PCAsYou are responsible for finding your own PCAs

Depending on where you live, it may be veryDepending on where you live, it may be veryhard to find PCAshard to find PCAs

Depending on your disability, it may be hard toDepending on your disability, it may be hard to Depending on your disability, it may be hard toDepending on your disability, it may be hard todo your own trainingdo your own training

The responsibility of directing your own care mayThe responsibility of directing your own care maybe more stressful than it is worthbe more stressful than it is worth

Managing your care schedule may be too difficultManaging your care schedule may be too difficult

When you have a PCA who does not show upWhen you have a PCA who does not show up(which happens), you must have a reliable back(which happens), you must have a reliable back--up plan in placeup plan in place

SOME ADVICE FROM SOMEONE WHO HASSOME ADVICE FROM SOMEONE WHO HASEXPERIENCED ALL ASPECTS OFEXPERIENCED ALL ASPECTS OFPERSONAL CAREPERSONAL CARE

Whatever system you choose for your personalWhatever system you choose for your personalcare, you must FEEL THAT YOU ARE SAFE, incare, you must FEEL THAT YOU ARE SAFE, inaddition to having your personal care needs metaddition to having your personal care needs met(if you don’t feel safe in your environment and(if you don’t feel safe in your environment andyour care, it will greatly affect your independenceyour care, it will greatly affect your independenceyour care, it will greatly affect your independenceyour care, it will greatly affect your independenceand feeling of welland feeling of well--being)being)

You will probably never have care as good asYou will probably never have care as good asyour parents provided when you lived at home soyour parents provided when you lived at home sobe prepared in that regard and try to bebe prepared in that regard and try to besomewhat flexiblesomewhat flexible

If you choose the “selfIf you choose the “self--direct” system of personaldirect” system of personalcare, be sure to conduct extensive interviews ofcare, be sure to conduct extensive interviews ofpotential care attendantspotential care attendants


Ask for at least 3 or 4 references and beAsk for at least 3 or 4 references and besure to check them out (a MUST)sure to check them out (a MUST)

Do background checks (ANOTHER MUST)Do background checks (ANOTHER MUST)

Make a list of expectations for yourMake a list of expectations for your Make a list of expectations for yourMake a list of expectations for yourcaregivers such as: call if you are runningcaregivers such as: call if you are runninglate, the household tasks that arelate, the household tasks that arenecessary, their personal use of cell phonesnecessary, their personal use of cell phonesand break times, where and when they canand break times, where and when they cantake smoke breaks, hygiene, etc.take smoke breaks, hygiene, etc.


Keep your PCA schedule in more than oneKeep your PCA schedule in more than oneplace for easy referenceplace for easy reference

Have PCAs log in and out and have themHave PCAs log in and out and have themkeep a log of what they have done such askeep a log of what they have done such askeep a log of what they have done such askeep a log of what they have done such asmedication administration and meal times,medication administration and meal times,etc.etc.

Remember that whatever personal careRemember that whatever personal caresystem you choose, you can change andsystem you choose, you can change andchoose the otherchoose the other

Being as independent as possible is theBeing as independent as possible is theultimate selfultimate self--esteem rewardesteem reward


Charlene (Charlene (CarleyCarley)) LefthandLefthand--IrvineIrvine Charlene (Charlene (CarleyCarley)) LefthandLefthand--IrvineIrvine

SelfSelf--Employed (Employed (Carley’sCarley’s Workshop)Workshop)

Student of the Year for S & K Tribes and Polson HSStudent of the Year for S & K Tribes and Polson HSDistrict; graduated 2002District; graduated 2002

Served on AIDTAC Board of DirectorsServed on AIDTAC Board of Directors

[email protected]@bresnan.net

I learned my Personal Care ProgramI learned my Personal Care Programvery early in life. I started by learning howvery early in life. I started by learning howto make my own choices. I developed theto make my own choices. I developed theability to ask for what I want and what Iability to ask for what I want and what Ineed.need.

In these pictures I am making choicesIn these pictures I am making choicesabout what to eat, choosing what toabout what to eat, choosing what towear, and asking for breakfast with mywear, and asking for breakfast with myECO talker.ECO talker.

I can ask for items without my talkerI can ask for items without my talkerby using body language. Here I amby using body language. Here I amusing a point.using a point.

I can get what I need byI can get what I need byasking…asking…

I want all my personal products outI want all my personal products outso I can make choices.so I can make choices.

I have two PCA workers. One is Corinne Irvine, my mom,I have two PCA workers. One is Corinne Irvine, my mom,and the other is Joyce Owen, who has worked with me forand the other is Joyce Owen, who has worked with me for5 years as my helper. I use my PCA supports to get my5 years as my helper. I use my PCA supports to get myPersonal Care Program and to do things I enjoy, likePersonal Care Program and to do things I enjoy, likecooking.cooking.

My wheelchair is very wellMy wheelchair is very well--fitted for my needs. I can reach tofitted for my needs. I can reach tothe ceiling. I can get into my closet for dishes. I can open thethe ceiling. I can get into my closet for dishes. I can open therefrigerator and freezer. I have an elevator lift, right and left legrefrigerator and freezer. I have an elevator lift, right and left leglifts, and tilt on my wheelchair .lifts, and tilt on my wheelchair .

Working TowardWorking TowardIndependenceIndependence

Independence means taking onIndependence means taking onchallenges early in lifechallenges early in life

You need to learn the jobs that you canYou need to learn the jobs that you cando so you are ready to live on your own,do so you are ready to live on your own,with supports in placewith supports in place

Joyce gets the laundry to my table tray. I put the laundryJoyce gets the laundry to my table tray. I put the laundryinto the washing machine. I take the wet laundry out andinto the washing machine. I take the wet laundry out andput it into the basket. Joyce puts the wet laundry into theput it into the basket. Joyce puts the wet laundry into thedryer. I help fold the flat items. I do laundry with supportdryer. I help fold the flat items. I do laundry with supportfrom Joyce.from Joyce.

Bed preparation canBed preparation canbe a place to begin…be a place to begin… Make sure all your safety items and therapeutic items are with youMake sure all your safety items and therapeutic items are with you

when you go to bed. Every night you need to practice for living on yourwhen you go to bed. Every night you need to practice for living on yourown. Your PCA needs to get use to the “be prepared” attitude also.own. Your PCA needs to get use to the “be prepared” attitude also.(We first create our habits and then our habits create us.) From now on(We first create our habits and then our habits create us.) From now ongetting ready for bed means more than putting on your PJs.getting ready for bed means more than putting on your PJs.getting ready for bed means more than putting on your PJs.getting ready for bed means more than putting on your PJs.

Becoming a team is a very important part of the process that leads toBecoming a team is a very important part of the process that leads toindependent living. The earlier you start, the better. We started whenindependent living. The earlier you start, the better. We started whenCarleyCarley was about 10 years old. We helped her to memorize her PCAwas about 10 years old. We helped her to memorize her PCAprogram and to not depend completely on Mother to do it all. Nowprogram and to not depend completely on Mother to do it all. NowCarleyCarley even reminds mom of things that need doing during the dailyeven reminds mom of things that need doing during the dailyroutine. She totally runs her PCA program and is able to train her newroutine. She totally runs her PCA program and is able to train her newworkers herself, with little support from family. Get started at bedtimeworkers herself, with little support from family. Get started at bedtimeand move through your program, memorizing every task.and move through your program, memorizing every task.

Getting Prepared forLiving on My Own

Here are the 6 items I need at bedtime. I askfor them individually from my PCA whofor them individually from my PCA whoworks at night. It is important to ask everynight for the items you need.

1. Turn on my Invacare Air Mattress formy bed please.

2.Please get my hand brace for me. Iwant to put it on now.

3.I will need my bed control to raise orlower my bed.

4.Put my Emergency Alert buttonwhere I can reach it now.

5.My ECO talker needs to be next tomy bed now.

6.Would you put my telephone on mybed for me now?


Corinne IrvineCorinne Irvine

Owns Rene’s Helping Hands, LLCOwns Rene’s Helping Hands, LLC

Specialized Foster Parent for 10 yearsSpecialized Foster Parent for 10 years

Served on AIDTAC Board of DirectorsServed on AIDTAC Board of Directors

Carley’sCarley’s mommom

Make a ScheduleMake a Schedule

Document every step of your Personal Care Schedule and howDocument every step of your Personal Care Schedule and howlong it should take for each task.long it should take for each task.

Be explicit about how transfers are done, how food is prepared,Be explicit about how transfers are done, how food is prepared,and about medications and times taken. Make a list of foods thatand about medications and times taken. Make a list of foods thatcannot be eaten, or are not desirable.cannot be eaten, or are not desirable.

List every step of each task and how you like to be treated duringList every step of each task and how you like to be treated duringthe task.the task.

Family or caregivers need to talk through each task as the youngFamily or caregivers need to talk through each task as the youngclient learns for themselves what feels right for them to beclient learns for themselves what feels right for them to becomfortable. Once the plan is in place, the whole plan getscomfortable. Once the plan is in place, the whole plan getsstreamlined with practice. Don’t mind the work it takes to getstreamlined with practice. Don’t mind the work it takes to getgoing. Time makes a team effort worth the initial work.going. Time makes a team effort worth the initial work.

Make a Schedule (cont.)Make a Schedule (cont.)

This book of reference will be very valuable to aThis book of reference will be very valuable to anewcomer to the personal care program. The clientnewcomer to the personal care program. The clientwill be able to direct each step as well. The providerwill be able to direct each step as well. The providerwill have a reference point to go to while learning.will have a reference point to go to while learning.This frees up the family from having to train eachThis frees up the family from having to train eachtask over and over again.task over and over again.This frees up the family from having to train eachThis frees up the family from having to train eachtask over and over again.task over and over again.

Include how much water and liquids need to be givenInclude how much water and liquids need to be givendaily and when they should be given. I also think youdaily and when they should be given. I also think youshould include what could happen if the person doesshould include what could happen if the person doesnot get fluids (constipation, impaction, hospitalizationnot get fluids (constipation, impaction, hospitalizationand lots of discomfort, for example.) An ounce ofand lots of discomfort, for example.) An ounce ofprevention is worth a pound of cure.prevention is worth a pound of cure.

Carley’sCarley’s Personal CarePersonal CareScheduleSchedule

Greet the SunGreet the Sun

I have to mention that I greet the Sun everyI have to mention that I greet the Sun everymorning as I wake up the Angel that lives inmorning as I wake up the Angel that lives inmorning as I wake up the Angel that lives inmorning as I wake up the Angel that lives inmy home. She wakes with a smile andmy home. She wakes with a smile andbrings her love to us. Every person assistingbrings her love to us. Every person assistingher needs to know that. You are to treat herher needs to know that. You are to treat herwith respect and dignity and listen to herwith respect and dignity and listen to herrequests for assistance. That is the wholerequests for assistance. That is the wholepurpose of this program. We are here topurpose of this program. We are here toassistassist CarleyCarley in her life and personal care.in her life and personal care.


Morning is a delightful part of the day asMorning is a delightful part of the day as CarleyCarley rarelyrarelywakes without a smile. If she is unhappy in the morningwakes without a smile. If she is unhappy in the morningsomething is wrong and you need to ask for assistance fromsomething is wrong and you need to ask for assistance fromfamily right away.family right away.

We awaken her with a soft voice by simply saying, “GoodWe awaken her with a soft voice by simply saying, “Good We awaken her with a soft voice by simply saying, “GoodWe awaken her with a soft voice by simply saying, “Goodmorningmorning CarleyCarley.” She does not like to be startled awake..” She does not like to be startled awake.Thank you for your consideration in this matter.Thank you for your consideration in this matter.

After a 5After a 5--minute wakeminute wake--up time, we askup time, we ask CarleyCarley, “Are you, “Are youready to get up?” She will reply with a head shake “yes” orready to get up?” She will reply with a head shake “yes” or“no.” If she answers “no,” give her 5 more minutes and then“no.” If she answers “no,” give her 5 more minutes and thena cue, “It is time to start your PCA Program.” She will rarelya cue, “It is time to start your PCA Program.” She will rarelytake more than one prompt. (Remember, cues are requeststake more than one prompt. (Remember, cues are requestsand suggestions, not commands.)and suggestions, not commands.)


See the handout forSee the handout for Carley’sCarley’s completecompletePCA schedule.PCA schedule.

Questions?Questions?

Carley’s Personal Care Schedule

Greet the Sun I have to mention that I greet the Sun every morning as I wake up the Angel that lives in my home. She wakes with a smile and brings her love to us. Every person assisting her needs to

know that .You are to treat her with respect and dignity and listen to her requests for assistance. That is the whole purpose of this program. We are here to assist Carley in her

life and personal care.

1. Morning is a delightful part of the day as Carley rarely wakes without a smile. If she is unhappy in the morning something is wrong and you need to ask for assistance from family right away. We awaken her with a soft voice by simply saying “good morning Carley.” She does not like to be startled awake. Thank you for your consideration in this matter. 2. After a 5-minute wake-up time, we ask Carley, “Are you ready to get up?” She will reply with a head shake “yes” or “no.” If she answers “no,” give her 5 more minutes and a then a cue, “It is time to start your PCA Program.” She will rarely take more than one prompt. (Remember, cues are requests and suggestions, not commands.) 3. Now it is time for a transfer to her wheelchair. She is continent and will need to go directly to the bathroom. (Carley is continent, but is not like everyone else. She is an individual and needs to be seen in that light. She has an urgency problem. This means she cannot hold her urine or bowel movement like other people. When she has to go, we need to assist her, and get her to the bathroom promptly.) Now we can start the transfer, being aware that we need to work together with Carley to get her to the bathroom. I always remind her that it is time to set up now in order to cue her that we need to move together. (You could say, “Let’s move together.”) I drop the rail down on the side of the bed. Then I slide her feet to the edge of the bed and guide them down toward the floor. I put my hands under her arms and raise her to a sitting position on her bed. She is pretty good at sitting on her own, but because she has Cerebral Palsy, I would never leave her sitting unassisted. Go directly into the transfer to the wheelchair. Cue her here by saying, “Lean forward to stand.” Now, with your hands under her arms above her waist, pull her forward and up to stand. She will use her body to assist and will come to her feet. Now pivot one step with your left foot until you are standing in front of the chair with Carley between you and the chair. Then cue her by saying, “Could you sit now?” Put her feet on the foot rests and secure them with the straps. Adjust her in her seat with her bottom against the back of the wheelchair. Always buckle her seatbelt for safety. Tell her you will meet her in the bathroom. She can drive herself there. Do not do any other tasks. Go to the bathroom and assist Carley to transfer to the toilet. 4. Toileting is done several times daily. Always the urgency issue should put toileting at the top priority over other tasks.

Carley says, “I need to go to the bathroom” in several different ways. It is her PCA’s responsibility to read sign language or hear the verbal request.

A. Carley’s sign for bathroom is a closed fist rotated back and forth. Sometimes when things get urgent she will just point to her private area and say “now” on her talker. B. She can say “I want to go to the bathroom” on her Eco Talker. Most of the time she will communicate her request this way. She, however, does not have the talker in the shower or in bed at times, so pay attention to her and you will be able hear or see when she need assistance in this area. C. Transfer to the toilet is done similarly to the one done from the bed. Once Carley has parked, release her feet from the foot rests and put them up out of the way to prevent her catching her feet on them during the transfer. (Because of the poor circulation of most quadriplegics, a small scratch or bruise can take a month or more to heal. Prevention can be its own reward!) Keep the same cue as in the bedroom lift - “Come to stand” or “stand now.” Put your hands under her arms and use the cue. “Come to stand.” She will lean forward and stand with your support. Then use your left foot and step in front of the toilet. Pull down her pants and then cue her with “sit now.” Working together is the way this is best accomplished. Boost her back on the seat so her bottom is touching the toilet seat at her back. (Dragging her though the transfer eliminates the many steps of self-accomplishment that Carley has gained. Although the results may seem the same, you have deleted her part in life skills by not including her work effort. I also need to say doing a transfer by dragging can cause you injury, which we hope to avoid.)] D. Carley cannot wipe herself. She needs you to do this task for her. We have already done trials to teach this skill and know for sure that you are the provider of this service to Carley. Please wipe from the back by letting her support herself on the railing provided in front of the toilet. First, use toilet paper and then use a wipe and dispose of it in the basket provided. (If you do not do this task correctly, she will blister in her private area. Heat builds while a person sits in a leather seat all day. Urine can cause serious burning.) You are done with the first step in her program. She is up and toileted. This should take about 15 to 20 minutes. Now you will move to bathing, dressing and breakfast.

Bathing -Dressing

Bathing There are two ways in which we bath Carley, a shower and the sponge bath. Before each bath or shower, all Carley’s personal care items and products will be put within her reach. She will make her own choices as to what items need to be used. We will start with the shower. Carley has an adapted shower that has a slight slope toward the rear of the shower stall. This helps the water to go toward the drain in the center back of the

shower stall. The front of the shower itself is only about 1 1/2 inches from the floor, which makes the shower chair easy to roll into. The shower chair has armrests and is equipped with brakes to lock it into place. Carley is pivot-transferred into her power chair, after the shower chair brakes are locked and Carley parks her power chair directly beside the shower chair. The two chairs are now 2 feet in front of the shower facing it. There should be a towel on the back of the shower chair because the netting on the chair irritates Carley’s skin. One PCA will stand holding the shower chair to prevent slipping while the other PCA will side-transfer Carley to the shower chair. She will secure the safety belt. The power chair will be backed up and put out of the way. With one PCA in front and one PCA behind, the chair is guided into the shower. It is placed facing the shower head. We have been directed by our PCA program to always do a two-man transfer into the shower in this exact process. (This must be done!)

Bathing in the shower begins with one of the PCAs in the shower with Carley. (Bring along a pair of shorts to use in the shower as you may get wet.) Carley will choose what shampoo to use, whether or not to use cream rinse, and which body wash she would like. She will also decide if she would like to be shaved or not. Cue her by asking what choices she would like to make. Always ask about the shaving because she goes through spurts of wanting to be shaved and not wanting to be shaved. Carley likes the water a little hotter than most people would like it but not hot. Wet her hair first. She has very thick hair and you will need to get it totally saturated or her hair will look oily after it dries. Have her tilt her head back slightly as you apply the shampoo to prevent soap going into her eyes. Put about 1/4 of a cup of shampoo in her hair. She has very thick hair and it needs to be lathered and scrubbed at the scalp to get out the oils that accumulate. Then rinse her hair for at least 8 to 10 minutes. She will get horrible dandruff if you leave any residue of shampoo in her hair. We now are ready to bathe her. First ask her if she would like to wash herself. She will point to her scrubber if she wants to do this or she will sign “no” if she does not want to. If she chooses to bathe, I give her the scrubber and she washes herself as far as she can reach and I pay attention to not rewash the areas she has done. She will hand you the scrubber when she is finished. You now will proceed to complete the shower by washing her back, under her arms, her arms and hands in between her fingers, her private areas, legs, feet and between her toes. (Carley is to be bathed completely. That is how she is use to being cared for. She will complain if you do not do a good job with the bathing.) After bathing, you will dry her off completely and do the two-man transfer you did to get her into the shower. One PCA will steady the shower chair and the other will do a slide-transfer to the power chair while both chairs are facing the front of the shower stall. Always remember to put a towel in the power chair so moisture does not get on her seat cushion before transferring Carley.

Dressing Dressing is done after the shower chair is returned to the shower, the bath mat is put on the railing and Carley has parked next to the washer and dryer. Put Carley’s personal care products out where she can choose what she would like to use. She likes to have lotion put on, be perfumed, have deodorant put on and also direct her PCAs though her needs at her private time of the month. She is an individual with her own ideas and we like to give her the chance to express that. Consideration only takes a moment.

Sponge Bath Sponge baths usually happen when Carley is sick on shower day or when her appointments interfere with her shower. We do the sponge bath when she is done toileting in the morning. She is undressed just like for a shower, while sitting on the toilet. We have towels and washcloths laid out beforehand. We also put out the personal care products so she has the choice of what to use. Bath her completely, face to feet, and please use the washcloth to clean her belly button, her feet, ears and neck. (I always tell new workers to bathe Carley as you would want to be bathed if you were in the wheelchair.) When you are done bathing her, please dress her and return the personal care items to their places.

FOOD PREPARATION

ALL FOODS MUST BE PUREED! Carley cannot chew, so all foods have to be cooked soft and pureed. We use a blender or food processor to chop and blend foods to the consistency that is right for Carley to eat. We ask her what she wants if a meal is prepared for the family and there are some choices. If dressings are on the table, we ask if she would like them. For instance, she likes sour cream on meals with potatoes, vegetables and meat.

Breakfast

1. Carley has instant oatmeal Monday, Wednesday and Friday for breakfast. She needs to eat this for roughage and fiber because most of her foods are processed. This oatmeal comes in flavors. I buy the brown sugar and apple and cinnamon, because she seems to be able to eat it without choking where others have not been as smooth for her to eat. 2. Carley also likes 3 or 4 toasted waffles cooked in the toaster. Put butter on them and blend them with milk to a smooth consistency. Then pour them in a bowl with maple syrup on top. Be moderate with the syrup as not to upset her sugar balance. 3. Carley likes cereal. We buy Cheerio's, Coco Puffs, and Cinnamon Toast Crunch or any cereal that will blend up to a smooth consistency. 1 1/2 cups cereal is put in the blender dry. Blend until smooth. You will need to stop and stir the contents of the blender several times before you arrive at the right texture. Pour into a bowl. Go though the bowl with your fingers, removing all lumps or large pieces from the bowl. (Remember that Carley cannot chew.) Pour milk over the cereal and let set for 5 minutes. The cereal will thicken. Stir and add more milk to make a smooth paste-like food (not watery, however). 4. Carley loves 2 eggs and toast made in the microwave or on the stove. Break 2 eggs in a bowl, put a little milk in (about 3 tablespoons), and whip the eggs until scrambled. Put the egg mixture in the microwave for 1 minute and stir. Return to the microwave for 1 minute. Now scramble the eggs until soft and fluffy, not hard. Put your eggs in the blender with 2 pieces of toast with butter on them. Blend with a little milk until smooth. Serve it to her hot. She would like juice or milk in a baby bottle or her adapted cut-away cup to drink.

Carley Helps Cooking and PCA Supports Carley is capable of helping run the microwave and the blender, as well as the toaster, so when time allows, you should invite her to help with the cooking. Carley can stir, run the timer, and

pour foods, too! These activities build self-assurance and with PCA supports in place, allow Carley to fix her own meals. (Carley does not cook on the electric stove at all!) Carley will need to have 3 bibs put on before every meal, drink or snack. One bib is not enough. She will need her table tray put in place on her power chair at the start of each meal. She also uses a rubber non-slip pad that keeps her bowls from sliding away from her when she eats. She always uses a small spoon to eat. She drinks out of a baby bottle with a large hole in the nipple or her cut-away cup with a removable handle for cleaning. Make sure her power chair is turned off every time she is parked to prevent accidents.

Lunch Lunch is a relatively easy meal because Carley likes to eat lightly at lunch. It should take about 3/4 of an hour to fix and for her to eat it. It will take 1/4 of an hour for clean-up. 1. She likes yogurt that is served in a bowl. The amount of yogurt is about 3/4 of a cup. She will drink milk or juice (let her choose) served in the baby bottle or cut-away cup (about 6 to 8 oz.). 2. She may choose a peanut butter and jelly or banana sandwich. This is made by putting two pieces of bread, 1/3 cup milk, 2 tablespoons peanut butter and 2 tablespoons jelly or one small banana in the blender and pureeing. If it comes out too watery, add one more slice of bread to the mix. Serve in a bowl with juice or milk to drink. Sometimes hot chocolate is nice too! Give her choices. 3. Fruit drink is another choice for Carley for lunch. They are made with 1/2 cup of fresh fruit or the same of canned fruit (include the juice of the fruit), one egg whipped and heated in the microwave for 1 minute, 2 teaspoons sugar, 1 cup milk, and 1/2 cup of yogurt. Blend at high speed until smooth. Serve in baby bottles. She likes this about once or twice a month. 4. Carley will sometimes ask for cereal for lunch. Check under “breakfast” to see how to prepare it.

Dinner

Dinner is usually shared with her family and it is the big meal of the day. We count on taking about 1hour for the meal. There will be meat, potatoes, vegetables, salads, pastas and many other combinations of foods. Use this rule: she can eat anything that can be pureed. Cut the food in small pieces and put it in blender. Even salad without nuts can be pureed (small amounts of salad with the rest of the food you are blending). Put all the food in the blender and puree to a smooth consistency, like pudding. Check though the prepared food as you put it in the bowl for lumps. Carley cannot chew so smooth means smooth…without any lumps. If you find lumps, remove or blend again. Carley loves rice with her meals and pasta. She does not like foods that are too hot in the spice department. TV dinners can be blended as well as canned soups. We also blend cheese and bean burritos. So experimenting is fine as long as the texture is smooth and she likes the taste.

The Routine for Bed 1. Carley needs to be taken to be toileted. After she is finished, we dress her in her PJs and brush her teeth. 2. Carley drives into her room and parks next to her bed. Pull the covers down to the foot of the bed. Now a pivot transfer is done to her bed (by now you have done lots of transfers). Set her on the side of the bed in a sitting position. Lay her back down and put her head on the pillow. Then swing her legs up onto the bed and cover her with her blankets. Now she will ask you for all of her safety items.

a. Her Emergency Alert button needs to be next to her on the bedrail. b. The telephone needs to be put on her bed. c. The bed control for raising and lowering the bed needs to be put on the bed beside her. d. Her air mattress needs to be turned on. e. Her hand brace needs to be on the bed so she can use it when she is ready to put it on. f. Carley will want her TV channel changer - put it on the bed. g. Carley’s Eco Device should be where she can reach it.

Now you are ready to turn off the light for her. She will not be able to reach it. Check the fire alarms twice weekly.

Transition and Personal Care Services

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