Planning for You and Your Special Needs Family Member

Planning for the future is the best possible way to protect and prepare you and your family for the unknown. If you have a loved one with special needs, the unknown may be something you are familiar with. Structuring a plan for your unique situation will provide the personalized solution that addresses the needs of your family.

Proper estate planning allows you to provide for and protect your loved ones if you become incapacitated or pass away. Your assets are preserved for your beneficiaries, and your estate is distributed according to your plan. An estate plan also lets you communicate your wishes to friends and family.

Planning for a loved one with special needs may be more common than you may think.  Depending on the nature of the person’s limitations and their relationship to you, planning could be for you or them or both.

Since some special needs situations are less obvious than others, let’s start by defining what special needs are. It is a term used for individuals who require assistance for disabilities that may be medical, mental or psychological. There are more than one billion people with disabilities in the world, according to the World Health Organization. That means that about 15% of the world’s population have some sort of disability. What qualifies as a disability is extremely diverse, but usually refers to someone who relies on some sort of assistance on a regular basis. Disabilities can be communicative (blindness, deafness), mental (Alzheimer’s, dementia or a mental or emotional condition that interferes with everyday activities) or physical (require a wheelchair, arthritis, cerebral palsy, epilepsy). But those are just a few examples for each and not every disability requires accommodation or even recognition in your plan.

My goal here is to provide you with some planning strategies involving a special needs family member.

Get Organized

Start by gathering information that you will need to make a plan or to help someone stepping in after the plan to care for you or your family. Some of this information you may already have on hand while other materials may take time and some effort to acquire. I recommend that you designate a folder or filing cabinet where you can store all information pertaining to your plan and let your loved ones know where to look. Forming a comprehensive estate plan along with supporting documents can take time so a central storage place simplifies things for everyone.

Personal Information

Prepare a list that includes you and your loved one’s personal information.  Everything from names, nicknames, dates of birth, addresses, phone numbers, Social Security numbers, Supplemental Security Income and Medicare numbers to anything that you think would be helpful for others stepping in to assist Once you speak to an attorney you may learn of other information you should add – but start getting it together on the front end. In addition to a list with all of this information, build a folder that holds copies of birth certificates, insurance policies, social security cards, military service records and any other important documents such as deeds and marriage certificates.

Digital Assets

When gathering personal information, be sure to include a document with information such as logins and passwords to access all of your digital assets. This is an often-overlooked step when planning. You have a lifetime’s worth of online files and accounts that may become inaccessible which causes more stress for your loved ones. Click here to download a worksheet to create an inventory list with all of your relevant files and accounts in one document. This can be a paper document that is stored with all of your other important documents or in a safe deposit box.

Emergency Contacts

Create a list of emergency contacts for both you and your loved ones. At least three methods of contact should be listed for each individual if known, even if some are shared. Include contact information for your spouse, significant other, children, siblings, parents, employer, business partner or key employee if they were not already listed. It’s not easy to think about who would take your place should something happen to you. However, it is a necessary step when planning for a smooth transition should you be incapacitated or have passed away.

Medical Information

Next, put together a list with all of you, and your loved ones’ medical providers and history. This includes names and numbers of primary care providers and specialists, medications, allergies, significant family history if possible, insurance policy numbers, your employer retiree coverage, health insurance, and any Medicaid or Medicare information. Also, note any counselors or an education plan if your loved one is still in school. People with disabilities report seeking more health care than people without. If you are responsible for or have access to your special needs family members medical resume be sure to include it. Should something happen to you, you’ll want whoever takes over to do so with as much ease as possible as not to disrupt care.

Legal Information

If you have a will, powers of attorney, living will, trust or any other estate planning documents store them together and make sure your family or designated decision makers knows where to find them. , This will also make it easier to collect when it is time to review your plan with your attorney to ensure everything is correct and still reflects your wishes.  It is essential to select an experienced estate planning attorney when preparing or updating your estate plan.

Make a Plan

Planning for your special needs loved one is often emotionally difficult.  Before meeting with your attorney take some time to envision how your incapacity or passing may impact your special needs family member.  If you are the caretaker, consider how you want your loved one or child with special needs cared for if you are unable to do so.  If you are not the caretaker, consider whether that may change over time or how an inheritance might affect their current benefits. You can’t plan for everything but by envisioning your wishes and their needs you will be in a better position to determine your options.  Then you can create a plan that will provide for your loved ones and fill in some or all of the gaps. If this seems overwhelming, one way to consider issues is by looking at what you don’t want (for example, don’t leave it up to your children if you will be kept on life support or force a family member to decide where your child will live if you die). By not laying out a plan, you are likely putting someone in a position to manage and make these difficult decisions on their own and possibly without knowing what you would have wanted. The odds that the law and your good intentioned family will bring about the result you desired is minimal.  Worse no plan can leave your special needs family with an inheritance that will hurt them far more than help.

Meet with Your Attorney

After you’ve taken some time to think about the future, sit down with your attorney. Your estate planning attorney should have experience in planning for families with special needs.  This should include familiarity with Medicare, Medicaid, Social Security and VA benefits at the very least. Your attorney is available to answer your questions and to discuss options some of which you may not have previously considered. Your attorney will draft the necessary legal documents that will express how you want your property, finances, healthcare and care for you and where appropriate your loved one with special needs handled following your incapacity or death. Your attorney can also help you set up financial strategies, such as trusts, to ensure your loved one with a disability can continue to maintain his or her quality of life when you are gone.

Your Plan

You are well on your way to establishing a more secure future for you and your loved ones! All of the following elements of your plan are important and either directly or indirectly affect all of your loved ones.

Letter of Intent

If you are the primary caregiver of minor children or a special needs person of any age, a letter of intent can help manage the difficult transition when you are no longer the primary caregiver. The purpose of a letter of intent is to memorialize your knowledge and desires regarding the needs of your child or loved one so that you can guide future caregivers, guardians and trustees in providing the best possible care. Simply put, this will allow those who come after you to determine the best way to manage and care for your loved one. This can include a general overview of their situation, a daily schedule, food, medical care, education, benefits received, residential environment, behavioral management, social environment and more. It really depends on your individual situation.  This is not a legal document but can work in conjunction with legal documents to provide direction for agents, executors, guardians and caretakers.

Finances

A durable power of attorney addresses financial decisions when you are incapacitated. A durable power of attorney is a flexible document that can be used for a single transaction or to give unlimited power over your financial affairs.  It can become effective immediately or only if the named individual becomes incapacitated. This would prevent the named agent from acting on your behalf as long as you are able to manage your affairs on your own.

Health Care

Making arrangements for your health care is crucial in an estate plan. A medical power of attorney determines who will make medical decisions for you if you become incapacitated.  A directive to physicans, commonly called a living will, expresses your desires for end of life care.

Guardianship

A  minor child may need a guardian if you are no longer able to care for them.  If their other parent is still living then they will become or continue as the primary caretaker.   An adult may need a guardian if they are incapacitated or disabled, meaning they cannot fundamentally care for themselves. If an adult is substantially unable to provide food, clothing, and shelter, care for their own physical health and manage his or her own financial affairs they are considered an incapacitated person. The adult may be suffering from a physical or even mental condition preventing them from properly caring for themselves and their estate. In the state of Texas, an incapacitated person also includes someone who must have a guardian appointed to receive funds from a governmental source. Learn more here about the Guardianship process.

Special Needs Trust and Your Estate

A Will specifies what will happen to your property at your death. This document among other things directs who should inherit. Because Medicaid and the Supplemental Security Income (SSI) programs impose rules about how much money a person with disabilities can have to remain eligible, your Will or estate plan may need to include a special needs trust. A special needs trust can ensure a quality of life for someone without affecting their ability to receive Medicaid and SSI. It is extremely important to execute this with the help of an attorney to avoid making costly mistakes.

Review & Update Your Plan

I often tell my clients that planning for the future is a process and not a one-time task. As circumstances change for you and your family, it is important to revisit your plan and update it to reflect your current situation.

No one ever said life was easy, and creating a strong estate plan is no exception. Please feel free to contact me or my office if you have any specific questions or if you would like to schedule an appointment.