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This article covers various ways and programs to help families pay for the non-medical care required by individuals with Parkinson's disease and for those suffering from dementia as a result of Parkinson’s disease. Annually, families spend an average of $10,000 on non-medical Parkinson's care, the vast majority of which is not covered by insurance and is paid out-of-pocket.
Often overlooked when considering financial assistance for Parkinson's care are the products that can help an individual maintain their independence, reduce their need for care, and therefore, reduce their care costs. This article also explores how to pay for these items, what common insurance programs, such as Medicare cover, and what other financial options are available.
We will not focus on how to pay for medical care and medications, as with the exception of experimental procedures, these expenses are usually covered by insurance.
It is worth discussing Parkinson's symptoms in an abbreviated fashion as these determine the type and amount of care required, which directly impacts the cost and how one pays for non-medical, Parkinson's care. (Should you be looking for a fuller review of Parkinson's symptoms, the PD Foundation does an excellent job of that on their webpage.)
Early stage or mild PD (stages 1 & 2 on the Hoehn and Yahr Scale) is characterized by tremors and mild changes to one's gait and posture. Medications effectively control these symptoms and individuals continue to be able to manage their own activities of daily living. As the condition progresses to moderate (Hoehn and Yahr stage 3), balance issues arise and occasional "freezes" occur. Freezing means for a brief moment an individual cannot begin movement or continue repetitive movements. However, persons are still able to complete their activities of daily living without assistance, albeit at a much slower pace than persons of the same age without the condition. It is at the later, more advanced stages (stages 4 & 5) where non-medical care becomes essential.
Most demanding of the non-medical care is providing assistance with the activities of daily living. What is somewhat unusual about Parkinson's is that persons usually require assistance with all five activities of daily living instead of just one or two. The fine motor skills required for bathing or oral care are compromised. The ability to make appropriate clothing decisions is less of a challenge, but the balance required to dress oneself is. Preparing food is nearly impossible, feeding oneself is difficult and assistance is usually required. Sometimes the simple act of swallowing food is a challenge. Persons with PD often experience an increased need to urinate, and this fact combined with mobility challenges makes maintaining continence an issue. Finally, transferring oneself from a seated to a standing position and vice versa is the last of the 5 essential activities of daily living and it can be quite a challenge.
Assistance required in the later stages of Parkinson's is not limited to help with motor skill related activities. The number of medications, frequency of dosages and consequences of missed doses making medication management of great importance. In many cases, even medication management technology cannot resolve the need for human assistance in this area due to motor skills and mobility issues.
The frequency and diversity of non-medical care assistance required by individuals with severe Parkinson's is such that assistance must be available 24 hours a day, 7 days a week. To be clear, 24/7 care is not required but the unpredictability of care needs means that someone must be available almost immediately when needed. Also contributing to the unpredictability is the high possibility of an injury due to a fall. Even more so then with normal aging, persons with Parkinson's are very likely to experience a fall due to the combination of their reduced sense of balance and dyskinesia (involuntary muscle movements). When a fall does occur, they are more likely to suffer an injury because slower reaction times reduce their ability to protect themselves during the fall. The need to have someone on premise 24 hours a day is further accentuated by the sleep challenges common to those suffering from PD.
Having established that persons in the later stages of Parkinson's and those with severe symptoms likely require 24/7 care availability, the question of in-home care vs. assisted living arises. The factors impacting this decision are specific to each family and go well beyond the financial. Having said that, cost is one major factor in the decision and it is helpful for families to be aware of the comparative expenses when making a decision.
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.
Medicaid benefits for persons with Parkinson's are difficult to summarize because Medicaid is not actually a single program but a collection of programs whose benefits differ in every state and depend on the location where one receives assistance such as at home vs. in a nursing home. Medicaid is also intended for persons with very limited income so some individuals with PD may not be eligible for this program. Furthering the complexity is the fact that even for persons who are eligible some Medicaid programs are not entitlements, meaning waiting lists for benefits may exist. Having said all that, most state Medicaid programs do offer some non-medical care assistance that is relevant and helpful to persons with Parkinson's disease. For simplicity purposes, we have broken these benefits into three categories.
1) Nursing Home Care - for persons who care needs are so extensive that nursing home care is required, Medicaid will cover the cost in all 50 states.
2) Home and Community Based Services - also called HCBS Waivers. These Waivers help persons who require a nursing home level of care to receive assistance in their homes. Services include personal care, assistive technology, and non-care support services, all of which are relevant to persons with Parkinson's. Each state has different Waivers with different benefits and eligibility requirements, but all states offer Waivers. The downside is that Waivers are not entitlements and waiting lists are very common. A complete list of each state's Medicaid Waivers with benefits that are relevant to Parkinson's is available here.
3) PCA / PCS Programs - 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.
There are other options and programs that may not provide direct financial assistance for non-medical, Parkinson's care, but they can lower a family's broader living expenses thereby freeing up resources that can then be re-directed towards the cost of care.
Respite Care - For those caring for a loved one with Parkinson's at home, especially those in the advanced stages of the condition, caregiving is a time-consuming and exhausting experience. Respite care, for those who cannot afford hourly home care, can provide several hours each week of caregiving assistance. There are several national respite care programs as well as many local ones. These include the National Family Caregiver Support Program and VA Respite Care. One should also check with their Area Agency on Aging to see if other respite care or vouchers for respite care are available locally.
Tax Credits - many of the expenses associated with caring for a loved one are tax deductible. Reductions in taxes means there are more financial resources available to be put towards the cost of care. Read more about tax credits and deductions relevant to caring for an individual with Parkinson's.
Clinical Trials - Though very rarely do clinical trials provide cash or care assistance, often they provide medicine and basic health monitoring free of charge. Aside from benefiting oneself, participation in a clinical trial provides benefits to the larger Parkinson's community. Current information on PD clinical trials.
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
Electric beds or mattresses
Large handled or self-stabilizing utensils
Medication management devices
Reaching assistance devices
Touch sensitive lighting
Walk in tubs
Wheelchairs and ramps
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.
Each state has an Assistive Technology Project (or Program). There is some overlap between these and the Independent Living Centers described in the above section. However, it is definitely worth one's time to look into your state's program as they typically offer device loan programs, they have refurbished equipment for sale at greatly reduced rates, and, to a lesser extent, some provide grants and loans for the purchase of devices. Contact information for each state program is available here.