Transition and Personal Care Services December 1, 2008 University of Montana Rural Institute Transition Projects http://ruralinstitute.umt.edu/transition
Introducing Darren Larson Independent Living Specialist Summit Independent Living Center UM Graduate in Political Science MT-TIRC Advisory Board member dlarson@summitilc.org
Personal Care Services Understand the Basics Establish a Professional Relationship with Your Caregiver
Understanding the Basics Three Realms Need to Be Medicaid Eligible State Plan Home & Community Based Services Big Sky Bonanza
State Plan Agency-Based or Self-Direct Basic personal care in areas of personal assistance, health maintenance activities, and household/escort needs Bathing, dressing, toileting, meal prep, laundry, etc.
Home & Community Based Services Waiver Program Available Across Montana Needs Based 215 slots Waiting list Shared Budget 4.5 Million Ventilators are excluded
HCBS Additional Services Adult Residential Living Adult Day Health Case Management Chemical Dependency Counseling Dietician Environmental Adaptations Habilitation Services Homemaker Services Nutrition Personal Assistance PERS Private Duty Nursing Psychosocial Consultation Respiratory Therapy Respite Care Special Child Care Transportation Therapies (OT, PT, Speech) Specially Trained Attendant Specialized medical equipment and supplies Services for Individuals with Traumatic Brain Injury
Big Sky Bonanza State Plan and HCBS combined Needs Based 13 slots Serving several western counties Personal Budget You control your own budget Services are calculated into a dollar amount Flexible spending options
Steps to Prepare 1. If you haven t, apply for Medicaid at local Office of Public Assistance 2. Make a referral into Mountain Pacific Quality Health Foundation for a home visit and authorization 1-406-443-4020 3. Research agencies that offer Personal Assistance Services in your community 4. Call and ask questions of the agency you are interested in Upon choosing an agency you will need to fill out their forms Be ready to define your need for personal care tasks, health maintenance activities, and household/escort needs 5. Complete PAS needs inventory prior to home visit
Consumer Profile Needs Inventory Document yes or no and how long for each task Do you have difficulties taking a shower? Can you dress yourself? Do you need assistance with an exercise program? Can you groom yourself? Do you have any difficulties getting to and using the bathroom? Can you get in or out of your bed or chair? Are you able to walk without help? Do you need assistance with fixing your meals? Do you need assistance with eating?
Consumer Profile Needs Inventory (cont) Document yes or no and how long for each task Do you need help with a bowel treatment? Do you need help with wound care? Do you need help with urinary system management? Do you need help with administration of medicine? Can you clean your home? Can you do your laundry? Do you need assistance with shopping?
Transitioning to a New Way of Life It can be frightening and uncomfortable to have people you are not used to assist you with your personal care This is NATURAL The feeling will not last and you will have the opportunity to meet some pretty cool people Don t allow this to hold you back from achieving your goals
Relationship Dynamics Yes, a relationship is a two-way venture But you are only responsible for and can only control your actions Be aware that your attitude can and often does dictate the attitudes of others
How to Develop an Effective Relationship Be yourself Be assertive in communicating your needs Take time to get to know your personal care attendant Respect boundaries Be friendly
Dealing with Difficult Caregivers Take time to discuss the issue If the PCA is agency-based and discussing the problem doesn t resolve the issue, then talk to their supervisor If all else fails, move on There are mostly good and competent caregivers out there Life is too short to waste it with those who aren t
Introducing Sierra Lode Alumnus of MYLF; serves on MYLF Advisory Council MT-TIRC Advisory Board member Summit Peer Advocacy Training graduate Communication Studies student at UM sierrasmil@bresnan.net
CHOOSING PERSONAL CARE: AGENCY-BASED CARE VS. SELF-DIRECT CARE When it is time for you to move into the next phase of your life when your parents are no longer your caregivers, there are choices to make regarding those who will provide your care and you are the person who will make those choices. Help and guidance from youth with disabilities who have taken this gigantic step before you can be of real benefit in helping you make informed decisions.
AGENCY-BASED Personal Care You choose a community personal care agency that manages your personal care. The agency provides, employs and trains the personal caregivers. The agency also helps with scheduling your care and is responsible for all of the paperwork.
SELF-DIRECTED Personal Care YOU choose who will provide your care. There can be any number of caregivers you choose for the amount of time you are allotted in your care plan. A caregiver can be a friend, a relative or someone you place an ad for. YOU are responsible for interviewing, background checks, hiring, training, scheduling, verifying the caregiver s timesheets, and also dismissing a caregiver if they do not work out. An independent living center in your community takes care of paying the caregivers and makes sure you do not go over the personal care hours that you are assigned.
How to choose??? If it is at all possible, it is a good idea to try both forms of personal care while you are still living at home. Try a couple of months at a time with each service. That way you will have had enough time to see how your care is managed and your parents will also be able to help you make the best decision. It is good to know you are not locked into the care system that you have chosen if, after a while, you decide it is not the appropriate system for you.
AGENCY-BASED PERSONAL CARE: SOME GOOD ASPECTS Agency trains the PCAs Agency provides the care attendants No shows are handled by the agency Agency takes care of the paperwork Agency does the scheduling Agency care attendants have had background checks
AGENCY-BASED PERSONAL CARE: SOME BAD ASPECTS PCAs are often late You can t expect the same person all of the time You may have a personality conflict with an agency PCA Because of their schedules, agency PCAs are often in a hurry and cannot spend the time on a more personal level Because of low pay, there is a high turnover of PCA staff You don t have complete control of an important aspect of your life
SELF-DIRECTED PERSONAL CARE: SOME GOOD ASPECTS You choose your own PCAs, which is the ultimate power of self-determination Your trained PCAs can help with the training of new PCAs Your PCA can be a friend, a relative, or anyone of your choice You can develop a relationship on a more personal level You set up your own schedule for your care You gain confidence in knowing that you have the control and the independence to govern one of the most important aspects of your life your personal care
SELF-DIRECTED PERSONAL CARE: SOME BAD ASPECTS You are responsible for finding your own PCAs Depending on where you live, it may be very hard to find PCAs Depending on your disability, it may be hard to do your own training The responsibility of directing your own care may be more stressful than it is worth Managing your care schedule may be too difficult When you have a PCA who does not show up (which happens), you must have a reliable backup plan in place
SOME ADVICE FROM SOMEONE WHO HAS EXPERIENCED ALL ASPECTS OF PERSONAL CARE Whatever system you choose for your personal care, you must FEEL THAT YOU ARE SAFE, in addition to having your personal care needs met (if you don t feel safe in your environment and your care, it will greatly affect your independence and feeling of well-being) You will probably never have care as good as your parents provided when you lived at home so be prepared in that regard and try to be somewhat flexible If you choose the self-direct system of personal care, be sure to conduct extensive interviews of potential care attendants
SOME ADVICE FROM SOMEONE WHO HAS EXPERIENCED ALL ASPECTS OF PERSONAL CARE Ask for at least 3 or 4 references and be sure to check them out (a MUST) Do background checks (ANOTHER MUST) Make a list of expectations for your caregivers such as: call if you are running late, the household tasks that are necessary, their personal use of cell phones and break times, where and when they can take smoke breaks, hygiene, etc.
SOME ADVICE FROM SOMEONE WHO HAS EXPERIENCED ALL ASPECTS OF PERSONAL CARE Keep your PCA schedule in more than one place for easy reference Have PCAs log in and out and have them keep a log of what they have done such as medication administration and meal times, etc. Remember that whatever personal care system you choose, you can change and choose the other Being as independent as possible is the ultimate self-esteem reward
Introducing Charlene (Carley) Lefthand-Irvine Self-Employed (Carley s Workshop) Student of the Year for S & K Tribes and Polson HS District; graduated 2002 Served on AIDTAC Board of Directors charlenelefthand@bresnan.net
I learned my Personal Care Program very early in life. I started by learning how to make my own choices. I developed the ability to ask for what I want and what I need.
In these pictures I am making choices about what to eat, choosing what to wear, and asking for breakfast with my ECO talker.
I can ask for items without my talker by using body language. Here I am using a point.
I can get what I need by asking
I want all my personal products out so I can make choices.
I have two PCA workers. One is Corinne Irvine, my mom, and the other is Joyce Owen, who has worked with me for 5 years as my helper. I use my PCA supports to get my Personal Care Program and to do things I enjoy, like cooking.
My wheelchair is very well-fitted for my needs. I can reach to the ceiling. I can get into my closet for dishes. I can open the refrigerator and freezer. I have an elevator lift, right and left leg lifts, and tilt on my wheelchair.
Working Toward Independence Independence means taking on challenges early in life You need to learn the jobs that you can do so you are ready to live on your own, with supports in place
Joyce gets the laundry to my table tray. I put the laundry into the washing machine. I take the wet laundry out and put it into the basket. Joyce puts the wet laundry into the dryer. I help fold the flat items. I do laundry with support from Joyce.
Bed preparation can be a place to begin Make 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 your 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 getting ready for bed means more than putting on your PJs. Becoming a team is a very important part of the process that leads to independent living. The earlier you start, the better. We started when Carley was about 10 years old. We helped her to memorize her PCA program and to not depend completely on Mother to do it all. Now Carley even reminds mom of things that need doing during the daily routine. She totally runs her PCA program and is able to train her new workers herself, with little support from family. Get started at bedtime and move through your program, memorizing every task.
Getting Prepared for Living on My Own Here are the 6 items I need at bedtime. I ask for them individually from my PCA who works at night. It is important to ask every night for the items you need.
1. Turn on my Invacare Air Mattress for my bed please.
2.Please get my hand brace for me. I want to put it on now.
3.I will need my bed control to raise or lower my bed.
4.Put my Emergency Alert button where I can reach it now.
5.My ECO talker needs to be next to my bed now.
6.Would you put my telephone on my bed for me now?
Introducing Corinne Irvine Owns Rene s Helping Hands, LLC Specialized Foster Parent for 10 years Served on AIDTAC Board of Directors Carley s mom
Make a Schedule Document every step of your Personal Care Schedule and how long it should take for each task. Be explicit about how transfers are done, how food is prepared, and about medications and times taken. Make a list of foods that cannot be eaten, or are not desirable. List every step of each task and how you like to be treated during the task. Family or caregivers need to talk through each task as the young client learns for themselves what feels right for them to be comfortable. Once the plan is in place, the whole plan gets streamlined with practice. Don t mind the work it takes to get going. Time makes a team effort worth the initial work.
Make a Schedule (cont.) This book of reference will be very valuable to a newcomer to the personal care program. The client will be able to direct each step as well. The provider will have a reference point to go to while learning. This frees up the family from having to train each task over and over again. Include how much water and liquids need to be given daily and when they should be given. I also think you should include what could happen if the person does not get fluids (constipation, impaction, hospitalization and lots of discomfort, for example.) An ounce of prevention is worth a pound of cure.
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.
Carley s Personal Care Schedule 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. 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 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.)
Carley s Personal Care Schedule See the handout for Carley s complete PCA schedule.
Questions?