--------------------- Forwarded message: Subj: Cost of Parkinson's to society Date: 95-06-19 14:03:22 EDT From: ParkActNet To: [log in to unmask] CC: Rweeks,Bonander,MWeiss,Quabitt CC: CocoSolo,[log in to unmask] CC: [log in to unmask] CC: MhDavila,[log in to unmask] CC: RickHansen,WILLMMSJ,[log in to unmask] CC: [log in to unmask],GagaAK CC: [log in to unmask] CC: [log in to unmask],PSchark192 CC: JDStedman,[log in to unmask] CC: MZobel The Parkinson's Action Network needs your help. We are developing data showing Parkinson's cost to society. We would like to ask that you spend a little time and complete the following form and return it to us, either through email or fax or regular mail. Feel free to give copies to your support group or friends with Parkinson's. The more information we collect the better. Thank you ahead of time for your help. Note: If you think some element of costs has not been included or you have other questions or comments, please let us know. Name of Parkinson's-afflicted person:____________________________________ Address:____________________________ Phone:______________________ ____________________________ ____________________________ Age: ________________ Age of onset of Parkinson's symptoms: __________ MEDICAL CARE COSTS [Totals per year, unless otherwise noted.] 1. Cost of medication per year: Paid by you and not reimbursed: $______________________per year Paid or reimbursed by other source (for example, Blue Cross, Kaiser, or Medicare): $______________________per year* [If you don't know the amount, say so.] Paid by whom: ___________________________________________________ Note: If medication was provided by your health care provider, etc. and you don't know the cost, note here what medication was provided:______________________ __________________________________________________________________ 2. Cost of medical care Neurologists visits, other Parkinson's-related medical procedures, treatments or other care) paid by you and not reimbursed: $______________________per year Neurologists visits, other Parkinson's-related procedures, treatments or other care) paid or reimbursed by a third party (for example, Blue Cross, Kaiser or Medicare): $______________________per year* Paid by whom:___________________________________________________ Note: If medical care was provided by your health care provider and you don't know the cost, note here what medical care per year was given (for example, four neurologists visits per year etc.):_____________________________________________ ________________________________________________________________ ________________________________________________________________ * If you don't know the amount, indicate D/K. 3. Cost of related care: Treatments necessitated by Parkinson's symptoms (physical therapy, etc.) paid by you and not reimbursed: $______________________per year Treatments necessitated by Parkinson's symptoms (physical therapy, etc.) paid by a third party (for example, Blue Cross, Kaiser or Medicare): $______________________per year* Paid by whom:___________________________________________________ Note: If related care was provided and you don't know the cost, note here what related care per year were given (for example, three physical therapy sessions, etc.):________ ________________________________________________________________________ 4. Other related costs (e.g., cost of travel and lodging for special procedures, second opinions, etc.) Paid by you and not reimbursed: $______________________per year Related costs paid by a third party (Blue Cross, Kaiser or Medicare): $______________________per year* Paid by whom: __________________________________________________ Note: If related costs were provided and you don't know the cost, note here what related costs per year were incurred (for example, airfare, lodging, etc.):___________ ________________________________________________________________________ Notes (elaborate here on any of the above):__________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ * If you don't know the amount, indicate D/K. COST OF CARE FOR PARKINSON'S-AFFLICTED PERSON: [If payment was made to another person for assisted living, a nursing home or other care for a person with disabled by Parkinoson's, please fill in this section.] 1. Assisted Living (e.g., in-home assistance with daily living, such as dressing, eating, bathing etc.) (Here specify the care given):__________________________________________________ ______________________________________________________________________________ __ Amount paid by you/your family and not reimbursed: $_______________________per year Amount paid or reimbursed by a third party, like a government agency, charity, etc.: $_______________________per year*, paid by: ___________________________ Note: If care was provided but you don't know the cost, describe the care given: ___________________________________________________________________ ___________________________________________________________________ 2. Nursing home or equivalent care: Amount paid by you/your family for a nursing home or equivalent, and not reimbursed: $_______________________per year Amount paid by a third party like a government agency, disability insurance plan, charity etc.): $________________________per year*, paid by:__________________ Note: If care was provided but you don't know the cost, describe the care given: ____________________________________________________________________ ____________________________________________________________________ Notes (elaborate here on any of the above) ______________________________________ ___________________________________________________________________________ * If you don't know the amount, indicate D/K. LOST WAGES/LOST PRODUCTIVITY 1. Wages/productivity lost by Parkinson's-afflicted person: If younger than 65, were work hours or responsibilities cut, early retirement taken or other actions taken which reduced, changed or cut short employment due to Parkinson's disability? _______ Yes ________ No If yes, what is or was the hourly compensation rate or equivalent for the work previously performed? $________________ How many hours per month are no longer worked that were worked before disability began? _____________________ If wages were reduced, by how much? $_________________________________ 2. Disability insurance, Social Security/SSI or other compensation: If younger than 65 and you are being compensated for retiring early or cutting back employment due to Parkinson's disability, indicate amount of compensation: $___________ per _________ (month, year, etc.) Paid by whom (for example, disability insurance plan, SSI, previous employer.): ___________________________________________________________________ 3. Wages/productivity lost by caregiver of Parkinson's-afflicted person: If younger than 65 and work hours were cut, early retirement was taken or other actions were taken reducing mployment income due to necessity of caring for a Parkinson's disabled person? _______ Yes ________ No If yes, note hourly compensation rate or equivalent for the work previously performed: $____________ How many hours per month are no longer worked that were worked before disability began?______________________________ If wages were reduced, by how much? $__________________________________________ Notes (elaborate here on any of the above) ___________________________________________ ______________________________________________________________________________ __ ______________________________________________________________________________ __ ______________________________________________________________________________ __