No one with early onset Parkinson’s 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 Parkinson’s 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 (and should) 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.
You’ll find a run-down of financial issues below. For other kinds of issues, take a look at our Early Onset Parkinson’s Disease page.
BUDGETING & FINANCES
Chronic illness can lead to increased medical costs and a resulting need for careful attention to finances.
Many young people with Parkinson’s have financial concerns.
Balancing a potential increase in healthcare expenses, and at the same time anticipating or experiencing a decrease in income, make budgeting and financial planning essential. There are many different tools individuals and families use to create budgets. Some people simply use an Excel spreadsheet or a software program such as Quicken®; others find that some of the free personal finance software downloads meet their needs.
It is common for people with chronic conditions to create a very lean budget and yet still have expenses exceed their income. The high cost of prescription drugs is often the culprit. For information about prescription drug assistance programs as well as additional programs and services that may be able to assist with other healthcare or general living expenses, visit our Young Onset Resource Guide.
Estate planning documents provide for the management of your decisions while you are alive if you cannot make them yourself (powers of attorney and advanced directives) and the distribution of your assets (wills and trusts).
Estate planning allows people to determine, in advance, how they would like their care and assets handled in the case of their disability or death.
When there is a chronic illness like young onset Parkinson’s disease, it becomes even more important for the individual or family to arrange for the funding and legal documentation necessary to support future special needs.
People often think that only the wealthiest people engage in estate planning. In actuality, there are aspects of estate planning that are essential for everyone, regardless of income or net worth. Generally, elder law attorneys who specialize in estate planning also have expertise in disability and special needs planning. An elder law attorney can educate you about your options and guide you through this process. To find an elder care attorney near you, contact the National Academy of Elder Law Attorneys (NAELA).
Some of the more basic aspects of estate planning include:
- Wills: Anyone over the age of 18 with any assets should have a will. It simply tells the world exactly how you want your assets distributed when you pass away. If you have children, this document should also include who you would like to care for your children should something happen to you. If you are to die without a will, state law dictates how your assets will be distributed (generally, half of your assets to your spouse and half to your children). You will have no additional say in how your assets are divided or who will care for your children (if you are not married).
- Trusts: Trusts provide for management of your assets while you are alive and can distribute your assets on your death. In some cases, trusts (and wills too) can be structured to permit a reduction in state or gift taxes and can help some estates avoid probate (going to court). Additionally, some trusts allow greater protection from creditors in cases of lawsuits.
- Giving: An estate planning tool that is typically a win-win situation for the person with the estate and the person or organization receiving the gift. However, if you may need Medicaid in the future, you should talk to an elder law attorney before any lifetime gifts are made, since these gifts can disqualify the person making the gift from Medicaid benefits.
POWERS OF ATTORNEY & GUARDIANSHIP
These documents authorize your designated agent to handle your financial and healthcare affairs (including life-extending or life-ending treatment decisions) on your behalf if you are unable to make those decisions yourself.
When it comes to planning for the future, be sure you understand the differences between powers of attorney and guardianship.
POWERS OF ATTORNEY
When you create a power of attorney, it does not mean that you can no longer make decisions about your health care or your finances; it just means that another person can act also. A power of attorney designates someone of your choosing to act on your behalf, and that “identified agent” might manage bill paying, handle a tax audit, or maintain a safe-deposit box. A power of attorney is typically terminated when the person who created the document becomes incompetent or dies, but it can be revoked at any time.
A durable power of attorney is a written authorization that gives someone else (often a relative or close friend) the power to make certain decisions on your behalf when you are unable to make those decisions. This type of power of attorney remains in effect as long as you are incapable of making your own decisions, and the identified agent must follow your wishes.
There are two different types of powers of attorney:
- Power of Attorney for Property: Allows an agent to buy or sell personal property, conduct business or banking, file tax returns, etc., on your behalf
- Power of Attorney for Healthcare: Allows the agent to make all of your healthcare decisions, should you become incapacitated, including: further treatment, matters of hydration/nutrition, and the withholding or withdrawal of life-prolonging treatment or equipment.
Guardianship is similar to a power of attorney with one significant difference: it involves the court in the decision-making process. A guardianship, sometimes called a conservatorship, can be granted over those who are deemed incapable of making their own decisions, their estate or both.
The agent appointed by the court to make these decisions is called the Guardian or Conservator. The appointee is generally a family member but could be a professional guardianship company. In some instances, the Public Guardian’s office may be appointed. All other options should be explored before initiating the guardianship process.
If an individual has no agents acting under powers of attorney, a family member may petition the courts to appoint a guardian of the person to manage a person’s healthcare decisions and/or a guardian of the estate to manage a person’s money and property. However, guardianships are expensive and invasive court proceedings. In many cases having powers of attorney in place can avoid the guardianship process.
Advance directives are legal documents that allow you to clearly communicate your wishes with regard to end-of-life care decisions.
Typically, advance directives include:
- Living Will: Specifies your wishes with regard to life-sustaining measures.
- Power of Attorney for Healthcare
- Do Not Resuscitate (DNR) Order: Indicates whether or not you would like healthcare professionals to provide CPR should your heart stop beating or if you stop breathing. Although frequently a component of advance directives, DNRs can exist without any other directives and not all advance directives include DNR