Special Needs Planning

You’re not alone.  Managing disability has a steep learning curve, and you likely are juggling many other priorities.  Although the needs of people with disabilities vary dramatically, the following steps usually are part of the process:

• Stabilizing the situation by figuring out what needs to happen in the short term;
• Assessing what insurance and benefits are available, and what they will cover;
• Determining what other resources may be available, and how best to use them;
• Making a care plan to ensure access to needed care, therapies, and medications; and
• Accessing information and community support to increase quality of life and one’s ability to protect one’s interests.

Organizations dedicated to helping people with the same disability may be able to provide information targeted to your needs, and can provide a support network of others who know what you’re facing.  You’ll also probably find it useful to consult from time to time with medical and legal professionals to address specific problems, verify information you’re given by others, or review and improve your current strategies and future plans.  It’s a long-term process, but over time, you’ll become an expert in what care, strategies, and resources are available, and how they can best be used to benefit you or your loved one.

Yes.  Special needs planning helps family members plan for their loved ones’ future care in two important ways:

• Planning financially. You’ll determine how best to use your assets to help your loved one.  This involves deciding how much of your assets should be used to help your disabled family member (as opposed to others), what assets should be used to fund the gift, and how best to make the gift.  Depending on your circumstances, it might be appropriate to purchase life insurance to increase the resources later available for your loved one’s care.  Since giving a gift outright to a disabled family member can cause him or her to be ineligible for government benefits like SSI or Medicaid, it’s important to structure any gift so as to avoid this problem.  A third-party special needs trust can be a helpful tool; see my special needs trusts page [hyperlink] for more information.
• Planning for transitions in care. This is especially important if you provide care or if your loved one lives with you.  If your absence could significantly interrupt your loved one’s care, forcing him or her to move immediately or rely upon absolute strangers, it can be helpful to be proactive, making a transition plan to help your loved one adapt in your absence.  This planning may include drafting a Letter of Intent to provide successor caregivers detailed information about your loved one, so that they can provide personalized care informed by your experience and knowledge of your loved one.  Letters of intent are discussed below.

A letter of intent is a way to provide a written record of information about your loved one to other caregivers.  This isn’t a simple checklist of diagnoses and medications.  Letters of intent provide detailed information and instructions about your loved one, including:

• Information about your loved one’s life up to the present, and about family members and others important in your loved one’s life.
• A record of your family’s religious beliefs, celebrations, and other traditions, and of your family’s values generally.
• Instructions about who should explain your death or illness to your loved one, with information about your loved one’s understanding of these topics.
• Contact information for care providers, and information about diagnoses, medications, and treatments (both successful and unsuccessful).
• Information about benefits and financial resources.
• Information about your loved one’s routines, abilities, preferences, and needs.
• A record of your goals and dreams for your loved one, reflecting your loved one’s abilities and interests.

Letters of intent are emotional and difficult to write.  Although people can draft letters of intent without legal counsel, my involvement can be useful.  I can help collect and record the information you provide in a way that will be easy for caregivers to review and use.  My practical experience working with care transitions for people with special needs also helps me understand what information may be especially useful to subsequent caregivers.

If you are unable to manage your affairs or make decisions, it’s likely that someone else will.   Through certain estate planning documents, you can name who this person will be, and can provide him or her guidance about how you want your affairs to be managed.

“Powers of attorney” are legal documents by which you (the “principal”) legally appoint a person or people (your “agent” or “agents”) to act on your behalf.  Having a power of attorney makes it much easier for a person to act for you, either under your direction or on your behalf.  For example, if you were in a serious car accident and needed skilled rehabilitation care, your agents could find the best possible facility, complete admissions paperwork, and make arrangements to pay your mortgage and other bills while you recovered.  If you become mentally incapacitated, powers of attorney can be instrumental in making sure that someone acts in a timely way to manage your affairs, and that decisions made for you reflect your priorities.

There are two commonly-used types of powers of attorney: financial and health care.  An agent under a financial power of attorney has authority to manage your financial affairs.  An agent under a health care power of attorney has authority to manage your health care, including granting consent for medical treatments and admitting you to a care facility.  A power of attorney can give the agent power immediately or can give the agent power only if certain conditions occur as described in the power.  Similarly, the agent’s power to act can be broad or narrow, depending upon how the power of attorney is written.

The other type of estate planning document relevant to this concern is an “advance health care declaration” (or “living will”).  An advance health care declaration becomes effective only when the person who made it is terminally ill or permanently unconscious.  An advance health care declaration provides specific guidance about whether you do or don’t want various treatments that might be used under these circumstances (for example, CPR, a breathing machine, tube feeding, etc.).  Sometimes people do not want these treatments.  They can be painful and invasive, and they can’t cure the person’s underlying condition. Doctors worry that, under these circumstances, administering these treatments only prolongs the process of dying and does more harm than good.

Advance health care declarations provide direction about your wishes for care during this period.  Absent your input, your health care decision-maker might not know what you would want, and might feel guilty about declining all available treatment – even when this treatment dramatically reduces your quality of life and only prolongs the process of your death.  Or, you may have wanted all available treatment, no matter what, but doctors might assure your decision-maker that you “would never want to live this way” and persuade him or her to decline treatments.  An advance health care directive can help solve these miscommunications, providing a record of your treatment preferences to serve as a guide for your end-of-life care.