Special needs planning as a caregiver for a loved one with special needs or a disability is not just about money but protecting your loved one. Special needs planning involves putting your wishes in writing, which may help ensure a smooth transition and consistency of care. It includes financial, legal, and personal preferences. It can also help avoid potentially lengthy legal battles and other unnecessary challenges in an already difficult time.
Legal documents that can help safeguard your loved one's future:
Appoint a guardian or conservator
Guardianship and conservatorship are similar; however, they shouldn't be confused. Guardianship has control over the care of minors, elderly persons who can no longer care for themselves, or those who are disabled. Conservatorship is a type of guardianship that's typically and more specifically associated with control over an adult's finances and financial decisions (and includes those who are elderly and who are disabled). A will may name guardianship for minor children. Both are legal arrangements and court appointed.
If you're unfamiliar with how the processes work, it's a good idea to educate yourself on your state and local laws, the different types of guardianship, and even gain a better understanding of legal language and law jargon. You may even wish to explore less restrictive alternatives to guardianship like durable power of attorney and a revocable living trust.
An estate planning attorney or special needs attorney can provide you with more guidance.
Create or update special needs trust
A special needs trust (SNT) is designed to provide financial support to a person with disabilities without jeopardizing the person’s access to certain government benefits. This type of trust is highly specialized and must conform to very specific requirements, including trust assets not being used to pay for basic living expenses such as food, clothing, and shelter.Create or update a last will and testament
A will is a legal document that defines how a person wants their assets distributed at death. It's one of the most common estate planning documents. Wills focus more on property and executors, assets and beneficiaries. For example, a will can designate guardianship for your minor children.
If you're a caregiver for a loved one with special needs or a disability, it's a good idea to avoid delaying making a will, as delaying could be putting your loved one's care at risk if you suddenly experience a health diagnosis or if you have a condition and it suddenly worsens. Preparing ahead of time can make navigating the care of your loved one easier in the event of your demise.
If you don't prepare a will, then your state laws will determine what happens to your assets—intestate.
Create a letter of intent
Think of a letter of intent (LOI) as a handbook that guides your support team on how to provide the best care for your loved one. It provides detailed instructions for your loved one's care such as medical and daily care that includes medical history, past and current medications, and medical providers. It can also include behavioral triggers, social or recreational likes, their personality characteristics, important nutritional preferences, and schedule and routines for activities of daily living. You may also wish to include names and contact information of providers, family members, and others who are part of your loved one's community of care.
When creating your letter of intent, no standard set of requirements applies. You can start with basic information and add more overtime. You may also find it beneficial to involve other caregivers while creating or reviewing your letter of intent to get other points of view. A LOI is not legally binding like a will, unless it includes specific language that the parties are legally bound to the terms.
Create an advanced directive, also known as a living will
Different from a last will and testament, a living will allow you to state your wishes regarding your medical care, as well as life-prolonging or end-of-life procedures, while you're alive (but may be incapacitated or unable to communicate). It's also a legally binding document.
You may wish to discuss with your healthcare provider about your preference for medical decisions like medical ventilation, tube feeding, organ donation, do not resuscitate (DNR) and do not intubate (DNI) orders.
If you're a caregiver, it's important to think about your wishes and values for your medical treatments. Preparing ahead of time can make navigating your care easier, in the event you are unable to communicate your own health care decisions in the future.
Consider consulting a qualified special needs attorney
Consider consulting with a qualified special needs attorney to secure your loved one's future and learn more about which legal documents might be best for you and your loved one. A qualified special needs attorney may offer expertise and knowledge in the subject area. If you choose to hire an attorney, be sure to do your research and select representation that will fit the needs of your family, who is experienced, and who will be open to answering any questions you may have.
If possible, take advantage of free consultations while you're making your decision and before committing to paying a retainer or any legal costs. If you're concerned about the costs associated with hiring an attorney, it's okay to inquire about how your retainer will be used and a payment plan. You could also consider seeking help from nonprofit organizations that provide legal assistance, law schools, or faith-based organizations.