The average annual non-medical care costs of an individual with Parkinson’s disease is estimated to be over $10,000.
It is not an exaggeration to say caregiving for someone with severe Parkinson’s is a full-time job and it is a job for which one is on-call 24/7.
Well over 50% of persons with Parkinson’s will eventually develop dementia as a result of the condition.
In 2016, the average cost of assisted living nationwide is $3,600 per month. However, individuals with PD tend to require more care than the average assisted living resident. Therefore, a ballpark estimate is $4,100 – $4,600 per month. See state specific costs here. Adding $500 – $1,000 over your state’s average should account for the additional care required for Parkinson’s in assisted living communities. Since individuals with advanced PD who remain at home need care availability 24/7, it is more economical to consider a live-in caregiver instead of home care at an hourly rate. Depending on where ones lives within the US, the monthly cost of live-in home care starts around $3,000 and goes up to $6,000. However, unlike assisted living where the care costs vary with care needs, live-in care tends to have a fixed cost regardless of care needs. State specific home care costs that reflect the geographic variations for live-in care are available here.
|Parkinson’s Care||Using Live In Caregiver||In Assisted Living|
|National Average||$4,500 / mo.||$4,250 / mo.|
|Range Across the US||$3,000 – $6,000 / mo.||$3,000 – $5,500 / mo.|
Medicare does offer assistance for individuals with Parkinson’s. Unfortunately in the non-medical realm the program provides almost no help. Medicare will not pay for personal care at home, in assisted living, or in adult day care. Medicare does not provide for assistance with the activities of daily living with the exception being when they are provided in a nursing home, and Medicare’s nursing home benefit is limited to partial coverage for a maximum of 100 days. Medicare does offer a home care benefit. However, this is for home health care, not for personal care at home. While our focus in this article is on non-medical care, a brief review of where Medicare can be helpful to persons with PD is worthwhile. As there is no conclusive medical test for Parkinson’s, the diagnostic process can be lengthy and require many doctors visits. These are covered by Medicare at 80% until the deductible is met. After a diagnosis of Parkinson’s, depression is not uncommon, and Medicare does pay for some psychological counseling. The declining motor skills associated with PD make both occupational therapy and physical therapy of high value and these are also covered benefits. An occupational therapist can also recommend products to allow a person with PD to continue to manage some of their own activities of daily living. Medications are, of course, a big part of Parkinson’s treatment and are covered by Medicare Part D. Finally, Medicare does cover the cost of some assistive technology and home medical equipment. Details of these are covered further in this article.
Under Medicaid, some family members can be paid as caregivers.
PCA stands for Personal Care Assistance or Personal Care Attendant and PCS for Personal Care Services. These are regular Medicaid programs that will pay a caregiver to come to one’s home and provide personal (non-medical) care such as assistance with the activities of daily living (bathing, dressing, mobility etc.) An especially attractive element of these programs is the fact that often times, the paid caregiver can be someone familiar to the individual with Parkinson’s. Friends and certain family members can be hired as paid caregivers. The downside of PCA / PCS programs are that the hourly wage that caregivers receive is very low and this is an optional Medicaid benefit. This means not every state offers this option as part of their regular Medicaid programs. A list of states which do offer PCS can be found here. Be aware that this list is not exhaustive and if one does not see their state listed, they should also inquire with their state Medicaid office if such a program is available in their state.
Almost all states have financial or care assistance programs intended for lower income residents that do not qualify for Medicaid. While these programs are not specifically designed for persons with Parkinson’s, those with the condition can most certainly benefit from them. Typically, the programs have a combination of eligibility requirements, partially financial and partially based on functional need. Functional need is usually determined as requiring assistance to manage several of one’s activities of daily living and most individuals with advanced Parkinson’s will meet this criteria. Other programs require a specific diagnosis such as Alzheimer’s or related dementia. Again, many persons with late stage PD have Parkinson’s related dementia and will qualify. The financial requirements typically review the candidate’s annual income. Persons or households with income within 200 – 300% of the federal poverty level are usually eligible. In 2016, these means households with annual incomes within the $25,000 – $45,000 range or less will qualify. The benefits of these programs vary considerably. Cash, though not unheard of, is probably the least common benefit. Instead these programs tend to provide services to help beneficiaries remain living in their homes. Therefore personal care, chore services, adult day care, respite care and personal emergency response services (PERS) are frequently provided either free of charge or at greatly subsidized rates. A state-by-state list of non-Medicaid assistance programs is available here, most of which are relevant to persons with PD or Parkinson related dementia.
US veterans with Parkinson’s disease can receive non-medical care assistance from the VA. From the VA’s standpoint, there are two categories of veterans with PD; those who may have developed the condition as a result of their military service and those who have the condition but it is not connected to their service. There are different categories of assistance available to both groups. Conclusive evidence attributing Parkinson’s to a cause is difficult. Fortunately, the VA does not require evidence other than the fact that the individual was exposed to herbicides such as Agent Orange during their service. For veterans enrolled in VA Health Care, the VA has an excellent website dedicated to Parkinson’s care. For those veterans not enrolled in VA Health Care and who cannot provide evidence they were exposed to herbicides during their service, they may still receive non-medical care assistance through veteran’s Basic Pension, Housebound or Aid and Attendance programs.
The majority of foundations associated with Parkinson’s focus their financial resources on finding a cure for the condition. However, there are a few organizations that provide assistance for patients and their caregivers. Most well know among these is the Melvin Weinstein Parkinson’s Foundation which helps families that cannot afford their care costs. A review of past taxes is a required part of the application process. Also worth mentioning is the Parkinson’s Wellness Fund which is a network of professional service providers who offer discounted services to individuals with PD.
SSDI, often referred to as simply Disability, is assistance intended for those individuals who are of working age and cannot work as a direct result of their medical condition. The SSA does not provide care assistance but instead provides financial assistance that can be used for care. To be eligible one must both have a written diagnosis of Parkinson’s Disease and have earned monthly income of less than approximately $1,000.
More so than many other conditions common to aging, persons with Parkinson’s disease can lessen their dependency on others and therefore reduce their care needs and care costs by utilizing assistive technology, home medical equipment, and by making structural changes to their homes. The good news about pursuing these options is that doing so opens up a world of other areas of financial assistance. Prior to examining the financial assistance options, it is helpful to list some of the possible assistive technologies and devices so the reader knows how broadly the financial assistance can be applied.
|Assistive Technology and Equipment for Parkinson’s|
|Adaptive clothing and shoes Computer equipment Electric beds or mattresses Fall monitors Grab bars Large handled or self-stabilizing utensils Lift chairs Medication management devices Reaching assistance devices||Stair lifts Touch sensitive lighting Transfer chairs U-Step walkers Voice amplifiers Walk in tubs Wheelchairs and ramps Writing tools|
Medicare’s coverage of durable medical equipment and assistive technology for persons with Parkinson’s disease seems somewhat arbitrary at best. Items such as wheelchairs and hospital beds are covered but stair lifts and walk-in tubs are not. Yet all these items serve the same purpose of helping individuals overcome personal challenges and remain living in their homes. Generally speaking, if an item is considered medically necessary, Medicare Part B will cover the cost. The gray area with Parkinson’s is that some technologies are not medically necessary but are necessary to allow an individual to manage their activities of daily living. Equipment or devices must be for use in one’s home (as opposed to in a nursing home). If purchased from a Medicare approved supplier, Medicare will pay for 80% of the allowable purchase price. Medicare will not pay for home modifications. Read more about Medicare’s policy and coverage for specific items.
Medicaid, through HCBS Waivers (defined earlier in this article), will pay for a very broad array of equipment, devices, and technology. Under certain consumer-directed waivers, almost any device that helps the individual to maintain independence will be considered a reimbursable expense. This includes certain home modifications, such as wheelchair ramps, bathroom modifications and stair lifts to allow persons with Parkinson’s to safely access their home. More on Medicaid and medical equipment here and home modifications here.
Through the VA Health Care program and their pensions, the VA offers veterans multiple avenues of assistance with medical equipment, assistive technology and home modification. The avenue best pursued depends on whether or not the individual with Parkinson’s Disease was exposed to herbicides during their military service. For those individuals not exposed, they are most likely to receive assistance from the Aid and Attendance pension benefit, VD-HCBS (which are similar to Medicaid HCBS Waivers) or the HISA Grant. For those veterans with PD who were exposed, VA Health Care will cover the cost of much assistive technology and medical equipment. Another option for veterans comes not from the VA but from a non-profit organization with a veteran-specific program called Heroes at Home. This program is intended to assist in making home modifications and typically provides free labor for modifications but does not cover the cost of materials.
These programs (discussed earlier in the article) are much more likely to provide for care services. However, some of them offer limited assistance with home modifications and, unfortunately, even fewer for assistive technology. Also worth noting are HUD Home Improvement Loans, and the Rural Repair and Rehabilitation Grants. While neither of these programs are intended specifically for persons with Parkinson’s, some families living rurally or experiencing financial hardships may find benefit in pursuing them.
Often referred to as ILCs, these are typically, private, non-profit organizations dedicated to helping individuals maintain their independence and while not specifically targeted towards Parkinson’s, many of their programs can assist persons with the condition. Most relevantly, many ILCs have assistive technology loan programs. They provide both long and short-term loans of expensive assistive technology devices. Longer-term loans tend to be for durable medical equipment. For instance, items such as hospital beds or movable wheelchair ramps. The shorter-term loans are usually for assistive technology devices so the individual has the opportunity to experience the device and determine if they are able to work with it and whether it allows them to achieve their desired goal. This allows the borrower to make a low-risk purchasing decision. Click here for a directory of local ILCs.