Financial, Legal and Insurance Information
It is emotional to watch the person you love become less independent due to advanced Parkinson’s disease. It can be hard to focus on practicalities like financial planning when you are adjusting to these changes. While there is no one-size-fits-all approach when it comes to advanced Parkinson’s, there are some basic legal, financial and insurance-related issues you can address that will help you and your loved one in the long term, regardless of the situation.
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If you haven’t already begun financial planning with your loved one, now is the time. A recent survey by Caring.com found that nearly half of family caregivers spend more than $5,000 each year on expenses like medications, medical bills and nursing care, and 30% spend more than $10,000. Having a budget also helps with organizing legal and insurance matters.
Create a Financial Plan
Having a financial plan, put together on your own or with a financial planner, is necessary to ensure your loved one’s needs will be met. Steps might include the following:
- Determine your loved one’s current income, expenses, assets and debts.
- Determine what financial assistance programs, such as Medicare, your loved one may qualify for. The American Association for Retired Person’s (AARP) Benefits QuickLINK can help you navigate available benefits.
- Create a monthly budget that you can stick to.
It is a good idea to think long-term, so the AARP’s long-term care calculator may also be helpful.
Financial Help Now
If you need help paying for Parkinson’s medications, check out the resources under “Medication Assistance” on the Groups that Can Help page. Government assistance programs listed on that page also might be able to help you financially.
There are a host of legal issues to wrap your head around when caring for someone with a chronic illness and with PD specifically. As Parkinson’s progresses, some of these issues become even more relevant.
People with advanced Parkinson’s are likely to qualify for general disability rights, under the Americans with Disabilities Act (ADA), as well as benefit rights under any income replacement policies or long-term care insurance plans they have. To figure out what your loved one is eligible for, you need to read the definition of “disability” under each policy and plan. Performing a thorough assessment of your loved one’s capabilities may also help in in this process.
The ADA includes one unique and beneficial section: your loved one’s rights regarding employment discrimination and access to public services and accommodations also extend to you, his or her caregiver.
Prepare Legal Documents
With the progression of Parkinson’s comes the risk for falls or other physical or mental upsets, which can cause unexpected health complications in your loved one’s care. As difficult as it is to think about now, legal issues will be even more overwhelming to manage if you wait until an emergency situation. The AARP’s Legal Checklist for Caregivers highlights some of the most important documents to have in place, including the following:
- Health Care Power of Attorney: A named health care proxy to advocate on your loved one’s behalf, if he or she is unable, for desired personal health care decisions. This does not just apply to end-of-life decisions.
- Advance Directives: Your loved one’s medical care preferences in writing—especially important in case of an accident making it impossible for him or her to communicate.
- Durable Power of Attorney: Similar to the Health care Power of Attorney, but for real estate, finances, government benefits and other logistics.
Part of feeling more financially secure as a caregiver is tapping into insurance benefits available to your loved one, from private insurance products to government programs. Below are a few insurance options that may be more relevant to those with advanced Parkinson’s.
Again, due to advanced PD, your loved one is more likely to qualify for disability-related benefits, including the following:
- Social Security Disability Insurance (SSDI): To qualify, your loved one must meet the “disability” definition and have paid into the Social Security system. A unique aspect of SSDI is that after two years of receiving benefits, your loved one becomes eligible for Medicare, regardless of age.
- Medicaid: While Medicaid primarily provides financial assistance to people living near poverty, persons with disabilities may also be eligible for benefits and qualify at slightly higher income levels.
Long-Term Care Insurance
As Parkinson’s progresses, your loved one will require more care than before, and you may not be able to provide it all. Long-term care insurance, a product that is purchased privately, can help. A good policy lets you hire someone to provide everyday living assistance to your loved one in any location, whether in an assisted-living unit, at home or in a hospice facility. If you qualify for Medicaid, you shouldn’t need long-term insurance. However, note that Medicare does not contribute to long-term nursing or in-home care costs.