Financial Options When Your Parent Has Parkinsons Disease
Whether your parent remains at home or moves into a nursing home, any care option you choose is going to be expensive. Out-of-pocket costs can become financially devastating, as care associated with Parkinsons disease can easily reach thousands of dollars per month and hundreds of thousands per year. To protect your parent and yourself, you need to consider all the available options, such as:
- Grants and financial assistance from various Parkinsons foundations and funds
- Your parents health insurance plan
- Medicaid coverage
- Veterans benefits if your parent served in the military
Is Parkinsons A Disability
Parkinsons Disease is considered a disability by the Social Security Administration According to the SSAs Blue Book, which is the list of conditions that can qualify for disability benefits.
Parkinsons Disease is located in section 11.06 of the SSAs Blue Book. If you have Parkinsons and you are not able to work for at least 12 months or longer because of your disease, you may be able to qualify for Social Security disability benefits and be considered disabled by the SSA.
In order to qualify for disability with Parkinsons, the SSA will examine all of your medical records and documentation to see if closely matches the listing for Parkinsons in the SSAs Blue Book.
In order for Parkinsons to be considered a disability, the following needs to be met despite taking prescribed treatment for three consecutive months:
Disorganization of motor function in two extremities, that results in an extreme limitation in being able to stand up from a seated position, balance while standing or walking, or use the upper extremities.
Or a Marked limitation and physical function in one of the following:
- Understanding, remembering, or applying information
- Interacting with others
- Concentrating, persisting, or maintaining pace
- Adapting or managing oneself
If you are able to match these listings, then you will be deemed disabled by the SSA and you will qualify for Social Security Disability benefits.
Is The Decision Not To Use The Scheme Related To A Preference For Using Public Transport Or Is It Due To Other Factors
10. Under 10% of people with Parkinsons are eligible to apply for the Motability scheme currently. We believe that low income and poverty is a factor in people not leasing a Motability vehicle. If someone with Parkinsons is on the enhanced rate of PIP at £245 every 4 weeks and possibly on Universal Credit or Employment and Support Allowance at £73.10 per week, then their household income may not enable them to take advantage of the scheme. A Motability car might not be the priority, whereas paying utility bills and medication costs are likely to be prioritised above this expenditure.
11. Research conducted by Sheffield Hallam University showed that the additional cost of Parkinsons on a household is around £16,582 per year. This includes health and social care costs, potential loss of income from reduced hours or retirement. This additional cost of living with the condition shows that household income for those with the condition is squeezed. So while mobility is an important element to maintaining wellbeing, participating in the Motability scheme may not be viable due to the cost.
12. Also, some people with Parkinsons cannot drive, have had their licence removed or dont have someone who is able to drive them, so the Motability scheme isnt that useful for them.
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Providing financial assistance to people living with Parkinson’s disease to help them rise above their diagnosis.
Help Them Feel Normalcy
A disease like Parkinsons can interfere with the normalcy of someones life. Because people may focus so much on the disease and its symptoms, your loved one may start to lose their sense of self.
When you talk with your loved one, dont constantly remind them that they have a chronic disease. Talk about other things like their favorite new movie or book.
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How Long Does It Take To Get Disability For Parkinsons
Unfortunately, there is no clear answer on how long it will take you get to get disability benefits for Parkinsons.
After your initial SSDI application is complete, it will take the SSA around 3-5 months to get back to you with a decision regarding your claim.
The exact time varies depending on the time it takes for you to get all of your medical records and information over to the SSA to make a decision.
If the SSA denies your application, you are able to appeal the decision, but that will prolong the time it takes for you get disability for Parkinsons.
The more medical evidence and documentation you have to support your claim with Parkinsons, the shorter time it could take for you to get the benefits you deserve.
Groups For Care Partners
Care partners may also benefit from joining support groups. The Parkinsons Foundation notes that it is important for care partners to remember to care for themselves as well as their loved ones.
Care partner support groups can offer emotional support and practical advice for those caring for someone with Parkinsons disease. A person can ask a doctor about local support groups or search for them online.
Organizations and websites that offer support for care partners include:
- The APDA: The APDA provides resources and support for care partners as well as people with Parkinsons disease.
- The Parkinsons Foundation: This organization also provides information for caregivers.
- The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.
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Caregiving For People Living With Parkinsons
Caring for a loved one with PD can be a challenging job, especially as the disease progresses. Former caregivers of a loved one with PD suggest doing the following : Get prepared, Take care of yourself, Get help , Work to maintain a good relationship with your loved one, and Encourage the person with PD for whom you care, to stay active.
Preparing for caregiving starts with education. Reading this fact sheet is a good start. More resources are available to you in theResources section of this fact sheet. Early Parkinsonâs disease usually requires more emotional support and less hands-on care. It is a good time for family members/caregivers to educate themselves about the disease.
Be Honest With Each Other
A trap some caregiver-patient partners can get into is one person becoming the nurse while the other is demoted to helpless patient. Thats not productive and can end up being harmful if, for example, the caregiver takes on responsibilities that the person with Parkinsons is perfectly capable of doing.
As a caregiver, try to start an open dialogue for tough conversations with your loved one where you come to an agreement about when the loved one truly needs help.
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For Those Who Are Eligible Is Not Leasing A Vehicle Through Motability A Voluntary Choice
8. It is a voluntary choice for most people whether or not to lease a vehicle through Motability. However, in order to renew or lease a vehicle through the Motability scheme an individual must have 12 months remaining of their benefit award. Therefore, some people with Parkinsons who have 11 months left of their Personal Independence Payment award are unable to take on a lease due to this rule.
9. This is a particular issue with PIP as the DWP makes a significant number of 2 or 3 year awards, even for people with long term conditions such as Parkinsons, whose mobility is only likely to worsen as their condition progresses. We would recommend the committee urges the DWP to reduce the number of short-term awards for people with Parkinsons.
Assistance And Treatment For Parkinsons Disease
Parkinsons disease can be controlled through the use of medication, which needs to be adjusted as the disease progresses. Physical exercise and professional therapy can also help assuage some of the worst effects on daily activities. In addition to healthcare professionals, there are organizations and programs available that can educate and support patients and their caregivers.
- Parkinson Society CanadaThis national organization partners with regional groups and 240 chapters and support groups to provide support, education, and advocacy for Canadians with the disease. It also helps fund research in the diagnosis, prevention, and treatment.
- Canadian Disability Tax CreditThose with Parkinsons disease may qualify for a Canadian disability tax credit. The disability tax credit is intended to help with extra expenses caused by the condition and to help sufferers lead a more normal, productive life.
- PhysiciansSince there is no cure, ongoing professional medical care is necessary. Parkinsons patients frequently need their medications adjusted or changed as the disease alters over time. Some patients also may benefit from surgery.
- Physical, Speech, and Occupational TherapySeveral different therapies can improve the quality of life for Parkinsons patients. Physical therapy helps with mobility and flexibility. Occupational therapy improves the performance of daily chores. Speech therapy aids in voice control.
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Center For Parkinson’s Disease & Other Movement Disorders
The Center for Parkinson’s Disease and Other Movement Disorders at NewYork-Presbyterian Brooklyn Methodist Hospital offers the only comprehensive diagnostic and treatment program for Parkinson’s and other movement disorders in Brooklyn.
Parkinson’s disease is a disorder of the central nervous system, involving the degeneration and loss of nerve cells in the basal ganglia of the brain. The disease occurs in both men and women and, while symptoms may occur as early as age 40, they are usually not apparent until patients are in their 60s or 70s.
For People Who Are Not Eligible Because They Do Not Get The Enhanced Rate Is There A Demand For Opening Up Access To The Motability Scheme
21. Yes, in particular people over 65 who are receiving Attendance Allowance. They currently cant access the Motability scheme but many might want to opt-in using their own money to pay for a car, as the scheme offers vehicle adaptations, is reliable and convenient.
22. Also, some people getting the standard rate of PIP mobility still may have significant problems with moving around and might want to access to the scheme. Perhaps Motability could scope whether having a wider range of price points with smaller cars available at a lower cost would be attractive for this client base.
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If You Or A Loved One Are Living With Parkinsons You Are Well Aware Of The Financial Burden The Disease Brings
Over and above the medical costs, the average annual indirect and non-medical costs for a person diagnosed with Parkinsonâs disease is over $19K â over $25K when combined with caregiver burden.
You may find you have to make some difficult decisions about which necessary services you are able to access.
We at Rise Above Parkinsons know how you feel. Our loved one has been on his Parkinsonâs journey for over a decade now, and during that time, weâve financed home renovations, adaptive gear, therapeutic services, and more. Weâve found these supportive services to be critical to his well-being and quality of life. And we want that for your loved one too.
Rise Above Parkinsons is a place where you can feel cared for, and where you can receive financial support, trust, and the attention you need. Our goal is to help your loved one live the best life possible. Because weâre all in this together.
Because you are so much more than your diagnosis.
We want to help you rise.
Getting Aid is as Easy as 1-2-3
Fill out a free, confidential application here.
Work directly with one of our Client Advocates to create your personal support plan.
Aid is then delivered directly to your service provider.
Getting Aid is as Easy as 1-2-3
Fill out a free, confidential application here.
Work directly with one of our Client Advocates to create your personal support plan.
Aid is then delivered directly to your service provider.
Additional Information
Complex Parkinsons Disease And Palliative Care
Complex Parkinsons disease is defined as the stage when treatment is unable to consistently control symptoms, or the person has developed uncontrollable jerky movements .
These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinsons disease, under the supervision of a doctor with a specialist interest in Parkinsons disease.
As Parkinsons disease progresses, youll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.
When theres no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making the end of a persons life as comfortable as possible.
This is done by attempting to relieve pain and other distressing symptoms, while providing psychological, social and spiritual support for you and your family.
Palliative care can be provided at home or in a hospice, residential home or hospital.
You may want to consider talking to your family and care team in advance about where youd like to be treated and what care you wish to receive.
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No One With Early Onset Parkinsons Disease Can Absolutely Predict What Lies Ahead But Doing Your Best To Plan For The Future Can Empower And Protect You And Those You Love
Even though Parkinsons disease tends to progress more slowly in younger people, making financial and legal plans now is important and becomes even more critical when there are dependent family members to consider.
The decisions involved in this kind of planning can be difficult to make, and the anxiety associated with these decisions often keeps these tasks at the bottom of our to-do list indefinitely. Recognizing that developing a plan is the goal and that plans can be revised over time may help you assume a proactive role when it comes to financial and legal matters. Consulting with professionals for guidance in these areas can also make the process much easier to understand and complete.
Youll find a run-down of financial issues below. For other kinds of issues, take a look at our What You Should Know Page.
Filing For Social Security Disability With A Parkinsons Disease Diagnosis
The SSA has a complied list guidelines of conditions that qualify for disability benefits. Under its listing in the Blue Book, Parkinsons Disease is a condition that can qualify a person for Social Security Disability benefits provided that certain diagnostic criteria are met and documented which include:
- bradykinesia, or tremor in two extremities causing ongoing problems with movement
- gait, or ability to stand
There is no single test that can provide a definitive diagnosis of Parkinsons Disease. Diagnosis is based upon an evaluation of the symptoms present, as well as a neurological examination.
Also, the presence of at least two of what are considered to be the cardinal symptoms of Parkinsons can be considered to be strongly indicative of the presence of the condition.
Additionally, tremors of the hands that occur while the hand is at rest, symptoms that begin on one side of the body, and/or a positive response to levodopa are also telltale diagnostic tools.
It can be assumed that these symptoms could be used as the basis for a Social Security Disability case on their own should they become serious enough to inhibit ones ability to work. If the disease has progressed to this point, however, the patient has likely already qualified based on physical/motor symptoms.
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What Are Medicare’s Coverage Options
Medicare is offered through the federal government as a fee-for-service program, designed to provide affordable health insurance coverage to elderly and disabled Americans. Medicare has two parts: Part A and Part B .
Part A Medicare coverage includes:
- All normal hospital services
Part B Medicare benefits require that you pay a monthly premium. You must also be entitled to Part A benefits to receive Part B benefits.
How Available And/or Useful Is The Information On The Motability Scheme
23. The Motability website is easy to navigate and offers functionality to live chat if there are questions. They have accessible ways to get in touch by phone, minicom and textphone with queries. Also, Motability also offer sign language interpretation. It is positive that they offer these options to ensure they meet the diverse needs of the client base, as not everyone is online.
24. We believe that the Motability scheme is referred to in the award letter, if someone has been successful. But wonder if any further information is provided as people may miss this useful information in the award letter.
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