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

1. 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

2. 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. 

3. 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, Maine’s 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.

4. 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

5. Alpha One - Our Services Housing • Access Design (Architectural Accessibility specialists) • Home Retro • Critical Access Financing • mPower (Maine’s 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

6. 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

7. Independent Living Paradigm

8. What is Independent Living? Independent Living ….. is control over one’s life based on the choice of options that minimize reliance on others in making decisions and performing everyday activities. This includes managing one’s 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)

9. 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.

10. 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.

11. What is Personal Assistance? Activities of Daily Living – ADL’s • Bed Mobility • Transfers • Locomotion • Dressing • Eating • Toilet Use • Personal Hygiene • Bathing

12. What is Personal Assistance? Instrumental Activities of Daily Living – IADL’s • 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

13. 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

14. 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

15. 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

16. Consumer Stories Maine consumer talks about using community based personal assistance.

17. 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.

18. 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.

19. Making Services Happen- Pairing together community resources Models of Community Based Personal Care Services • Home Health Services Model • Agency provides • Certified Nursing Assistants (CNA’s) • Personal Support Specialist (PSS) • Registered Nurse - ongoing • Monitor vitals • Medication Set up • Monitor medical needs (skin, UTI’s, 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)

20. 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

21. 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-Information/By-Topics/Long-Term-Services-and-Support/Long-Term-Services-and-Support.html • Your state’s Department of Health and Human Services • Your state’s Office of Elder and Adult Services • County Health Services

22. Making Services Happen- Pairing together community resources Accessing Services • Centers for Independent Living (CILs) http://www.ilru.org/html/publications/directory/index.html • The National Association of Area Agencies on Aging (AAA’s) http://www.n4a.org/index.cfm • Administration for Community Living http://acl.gov/Programs/CDAP/OIP/ADRC/index.aspx

23. 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

24. Making Services Happen • Self Hire Example job Description My day will begin at around 7:30 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.

25. 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 day’s level of activity for me.

26. 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.

27. 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.

28. 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 • Craig’s 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

29. 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

30. Consumer Stories Maine consumer talks about personal assistance needs in agriculture

31. Other Resources • Veteran’s 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

32. Questions - Comments? Thank you Wanda Caron, COTA/L wcaron@alphaonenow.org Ketra S. Crosson, OTR/L kcrosson@alphaonenow.org Visit us online at alphaonenow.org