Wanda Caron, COTA/L Ketra S. Crosson, OTR/L

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Empowering Farmers with Disabilities
to Manage Their Own Personal Assistance At Home
and On-the-Farm

• Wanda Caron, COTA/L Ketra S. Crosson, OTR/L
  
• AgrAbility Specialist
  AgrAbility Specialist

Visit us online at alphaonenow.org
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Definition of a CIL

• Centers for Independent Living empower consumers
  with disabilities through core services including
  peer support, advocacy, skills training and
  information referral, to gain or regain
  independence. 
• CILS are created by people with disabilities for
  people with disabilities and at least 50 of
  staff working at a CIL have a disability. 
• CILs are also governed by a board of directors
  that must consist of people with disabilities. 
• As a Center we can provide peer support through
  staff or through other consumers to offer first
  hand knowledge about removing barriers.  This
  provides a unique perspective of not only being
  able to talk the talk, but to walk the walk when
  supporting consumers with like needs. 

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Alpha One - Who we are

• Our Vision
• As the result of Alpha One's endeavors, Maine
  will be a model for the nation in enabling people
  with disabilities of all ages to live
  independently.
• Our Mission
• Alpha One, Maines Center for Independent
  Living, directed by and for people with
  disabilities, is committed to providing the
  disabled community in Maine with information,
  services and products that create opportunities
  for people with disabilities to live
  independently.  

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Alpha One - Our Services

• Personal Assistance Services
• Consumer Directed
• Transportation
• Adaptive Driver Evaluation
• Recreation
• Open Waters (Adaptive Scuba diving)
• Rink Link (Adaptive Ice sports program)
• Adaptive Equipment
• Renegade Wheelchairs
• Other
• Maine affiliate for New England ADA Technical
  Assistance

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Alpha One - Our Services

• Housing
• Access Design (Architectural Accessibility
  specialists)
• Home Retro
• Critical Access
• Financing
• mPower (Maines adaptive loan fund)
• Personal Finance Skills Training
• Title 7 part b
• Independent Living Services
• Information Referral
• AgrAbility
• Hear in Maine
• Independent Living Assessment and Skills Training
• Homeward Bound

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Learning Objectives

• Participants will . . .
• have an increased understanding of personal
  assistance for home and on-the-farm
• have an increased understanding of personal
  assistance funding options
• understand how to take a primary role in
  determining personal assistance needs as well as
  how to meet this need

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Independent Living Paradigm
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What is Independent Living?

• Independent Living .. is control over ones life
  based on the choice of options that minimize
  reliance on others in making decisions and
  performing everyday activities. This includes
  managing ones affairs, participating in day to
  day life in the community, fulfilling a range of
  social roles, and making decisions that lead to
  self determination and minimization of
  psychological or physical dependence upon others.
• (Frieden, Richards, Cole and Bailey, 1979)

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Independent living is not

• Just a matter of living on one's own, being
  employed in a job fitting one's capabilities and
  interests, or having an active social life.
• These are aspects of independent living.

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Independent living is

• About self-determination.
• Having the right and the opportunity to pursue
  your own course of action.
• Having the freedom to fail - and to learn from
  one's failures, just as
• non-disabled people do.

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What is Personal Assistance?

• Activities of Daily Living ADLs
• Bed Mobility
• Transfers
• Locomotion
• Dressing
• Eating
• Toilet Use
• Personal Hygiene
• Bathing

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What is Personal Assistance?

• Instrumental Activities of Daily Living IADLs
• Meal Preparation/Cleanup
• Telephone/Technology use
• Housework
• Vacuuming
• Mopping
• Cleaning bathroom
• Take out the garbage/recycling
• Dusting
• Make and change bed
• Managing Finances
• Grocery Shopping/Personal Shopping
• Laundry

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What is Personal Assistance?

• Job Related Assistance with farm tasks
• Set up environment or work task
• Assistance on/off farm equipment
• Working side by side with the farmer with a
  disability, assisting as needed
• Help manage energy level by doing part or all of
  a task for the farmer with a disability
• Help manage pain by doing part of all of a task
  for the farmer with a disability
• Increase the safety, so that the farmer with a
  disability is less likely to take a risk

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What is Personal Assistance?

• Job accommodation by an agricultural employer
• Set up environment or work task
• Completing work tasks that may be out of the
  reach range of the employee or outside of
  lifting limits
• Working side by side with the employee with a
  disability, assisting as needed
• Help manage energy level by doing part or all of
  a task for the employee with a disability

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What is Personal Assistance?

• Job accommodation by an agricultural employer
• (continued)
• Help manage pain by doing part of all of a task
  for the employee with a disability
• Increase the safety, so that the employee with a
  disability is less likely to take a risk
• Assist with phone or other communication
• Drive employee with disability to meetings

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Consumer Stories

• Maine consumer talks about using community
  based personal assistance.

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Making Services Happen- Pairing together
community resources

• Medicaid Funded Community Based Personal Care
  Services
• Address ADL IADL needs
• Card carrying Medicaid (100 of poverty level)
• Consumers with fewer care needs
• Need limited assist (person highly involved in
  the activity but need some form of assistance to
  complete task)
• Hours cap range 20 to 30 hours/wk.

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Making Services Happen- Pairing together
community resources

• Medicaid Funded Community Based Personal Care
  Services
• Medicaid Home and Community Based Waivers
• Allow for a higher consumer income (125 of
  poverty level), or higher with a cost-of-care
  contribution
• Waive spousal income
• Consumer has higher care needs (equivalent to
  those in a nursing home)
• Need extensive assist (person involved in the
  activity but need near to full caregiver
  assistance to complete task)
• Hours cap in Maine - 64 and 86 hours/wk.

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Making Services Happen- Pairing together
community resources

• Models of Community Based Personal Care Services
• Home Health Services Model
• Agency provides
• Certified Nursing Assistants (CNAs)
• Personal Support Specialist (PSS)
• Registered Nurse - ongoing
• Monitor vitals
• Medication Set up
• Monitor medical needs (skin, UTIs, etc)
• Change indwelling catheter
• Staff are scheduled by the agency
• May be limitations on when staff are available
  (times of the day, days of the week)

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Making Services Happen- Pairing together
community resources

• Models of Community Based Personal Care Services
• Consumer Directed Model
• Consumer direct hires through advertizing or
  networking
• Or hires from a pool of staff that have already
  been vetted
• Staff are trained on-the-job by the consumer, so
  do not need to have CNA or PSS training
• Staff, under the direction of the consumer can
  cover all tasks otherwise provided by CNA, PSS,
  or RN
• Consumer determines the schedule of the Personal
  Assistant (PA) and the tasks they complete
  during the scheduled time
• Consumer manages staff day-to-day and can fire
  where indicated
• Combination of Home Health and Consumer Directed

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Making Services Happen- Pairing together
community resources

• Accessing Services
• Centers for Medicare and Medicaid (CMS)
• Long term Services and Supports
• http//www.medicaid.gov/Medicaid-CHIP-Program-Info
  rmation/By-Topics/Long-Term-Services-and-Support/L
  ong-Term-Services-and-Support.html
• Your states Department of Health and Human
  Services
• Your states Office of Elder and Adult Services
• County Health Services

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Making Services Happen- Pairing together
community resources

• Accessing Services
• Centers for Independent Living (CILs)
• http//www.ilru.org/html/publications/directory/in
  dex.html
• The National Association of Area Agencies on
  Aging (AAAs)
• http//www.n4a.org/index.cfm
• Administration for Community Living
• http//acl.gov/Programs/CDAP/OIP/ADRC/index.aspx

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Making Services Happen

• Self Hire
• Fee for-service from Home Health Agency for ADL
  and IADL services only
• Farm employee with both farm and personal care
  skills
• Job accommodation by an agricultural employer
• Barter
• Time /Dollar Network
• http//www.hourexchangeportland.org/howitworks.php
  

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Making Services Happen

• Self Hire
• Example job Description
• My day will begin at around 730 a.m. after my
  morning care. I will need for you to have my
  equipment set up and ready by this time. My
  physical needs can fluctuate depending on my good
  and bad days so you may need to help me become
  situated in my seated position depending on which
  equipment I may be using.
• In some areas of the farm phones are not
  reliable. We do have radios to assist with
  communication on these days, but know
  communication is very important since I am not
  able to leave the equipment to deal with issues
  outside the cab or seated position. At times I
  will also need different levels of assistance in
  managing my positioning or other personal care
  needs throughout the day.

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Making Services Happen

• Self Hire
• Example job Description (Continued)
• Good or bad days are based on several factors
  which can include but may not be limited to
• Extreme temps can cause me to have low energy
  levels. I can try to regulate this with air
  conditioning, but you will need to pay attention
  to my personal needs since the consequences can
  mean a trip to the ER.
• At times I may develop an infection somewhere in
  my body and my ability to move will be limited.
  This can happen without any warning and you may
  be the first to notice my changes.
• Having pushed and done too much the day before
  may affect the next days level of activity for
  me.

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Making Services Happen

• Self Hire
• Example job Description (Continued)
• Personal care needs can be
• Help me set up my lunch or snacks depending on
  what and where I may be during the day.
• If in the middle of the field you may need to
  help me with my leg bag a couple of times
  throughout the day.
• If my level of energy is challenged you may need
  to assist me more with loading on and off the
  equipment.

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Making Services Happen

• Self Hire
• Example job Description (Continued)
• Farm tasks needs can be
• Help me get set up at different stations on the
  farm so I can carry out my tasks.
• You may need to change my equipment on the
  tractor limiting the amount of transfers I may
  need to do.
• Bring my power chair to areas I may need it, if
  leaving tractor behind in the field and help me
  maneuver it the terrain is not manageable for the
  chair.

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Making Services Happen

• Self Hire
• Advertizing
• May be typical farmer networking or hiring routes
• Newspapers (daily, weekly)
• Ag newsletters
• Word of Mouth, circles of relationships
• Craigs List
• College students OT, PT, RN, CNA programs, Ag
  students
• Interviewing
• Funding your self hire cost of doing business
• Incorporate into business plan
• Work Plan with Vocational Rehabilitation

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Making Services Happen

• Combining services
• Medicaid funded service or self pay for ADL and
  IADL needs to get out the door and onto the
  farm
• Self-hire for on-farm ADL and farm task needs
• Back up plan
• Planning for PA sickness or vacations
• Substitute PA may not do all tasks, but help
  with the most important things to get by until
  regular staff return

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Consumer Stories

• Maine consumer talks about personal assistance
  needs in agriculture

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Other Resources

• Veterans Administration Aid Attendance
• State funded personal assistance for those over
  income/asset for Medicaid
• Tech Act Resource AT for personal care or farm
  
• Adaptive Equipment
• Equipment Lending Closets
• Classified Ads for AT
• http//www.ataporg.org/
• AgrAbility list serve ask questions of the
  greater AgrAbility team about meeting personal
  assistance needs,
• at home and on-the-farm

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Questions - Comments?

• Thank you
• Wanda Caron, COTA/L
• wcaron_at_alphaonenow.org
• Ketra S. Crosson, OTR/L
• kcrosson_at_alphaonenow.org

Visit us online at alphaonenow.org