Special Needs Planning Attorney
Special needs planning is a unique practice area dedicated to addressing the many challenges that a person with a disability faces. While estate planning is necessary for everyone, it is especially important when you have a child or other family member with special needs. Families are often so busy with caring for their loved one today, that they fail to plan for their future care. It’s critical to ask yourself, “Who will care for them if/when I’m no longer able to do so?”
Many parents and family members are, understandably, unaware of the type of care that will be needed or what type of benefits they will be eligible for once they turn 18. Effective planning by parents can make all the difference in the life of a disabled person or that of a sibling who might be left with the overall responsibility of caregiving for a family member and/or aging parents.
As most individuals with a special needs family member know, their situation is no longer unique. One in ten families in the United States have a child or loved one with special needs. Current US Census data indicates that 2.8 million school-aged children (over 5%) have a disability as defined by the Individuals with Disabilities Education Act. The number of Americans living with a disability that impacts major life activities has steadily increased to roughly 1 in 4 adults and 2 in 5 people over the age of 65.
Special Needs Trusts – Supplemental Needs Trusts
A special needs trust is a specialized legal document designed to benefit or care for the long-term needs of the person who has a disability. There are two primary reasons for a special needs trust. One is to keep the assets for the benefit of your loved one from being counted as his or her own assets, which can disqualify them from government assistance such as SSI, subsidized housing (HUD), and or vocational rehabilitation benefits. The second reason is the ability to provide supplemental care over and above what the government provides. Such costs could include dental care, insurance, education, therapy, essential equipment and other basic costs of living expenses. Your loved one will have a good quality of life and will never be alone because the trust can provide for caregivers for the life of the disabled.
While special needs trusts can be written into a will or revocable trust, for the most part, they are a separate document. This allows for family and friends to contribute directly to the trust or allow the specific name trust to be included in their own estate plans. The stand-alone trust also allows for more flexibility allowing gifts either through survivorship or second to die life insurance policies.
If the government is providing for all of the disabled person’s needs, the trust’s distributions will be limited. If however, the parents have sufficient assets and prefer not to have their child receive government benefits, they can set aside a sufficient amount to cover all the child’s living expenses inside the trust. The trust can be a discretionary trust that will distribute income and principal at a trustee’s discretion for the benefit of the child during their lifetime.
Naming a Trustee or Successor Trustee to a Special Needs Trust
It is sometimes advisable for an independent professional Trustee, like an attorney, CPA or Trust Company, to act as a Trustee or Successor Trustee to a Special Needs Trust. Because family dynamics are often so complicated, it is sometimes in the best interest of the special needs individual to have an independent person act as the Trustee or Successor Trustee of a Special Needs Trust.
This way, not only can the family do what they do best, i.e., love the individual with special needs, but you can better ensure that the terms of the trust will be followed and that the Trustee will act independently of any internal family complications.
One way to be clear about what you intend for your loved one is to write a “Letter of Intent” to be given to the Trustee at the time of your death. This letter informs family members and others about your knowledge of the loved one’s situation along with instructions for caregivers.
When someone turns 18, they become an adult and are expected to make the right to make decisions about their medical treatment, finances, and life.
In order to make these decisions binding (in a legal sense), the person should be competent to understand the decision being made and the consequences of that decision.
Guardianship is a legal proceeding in which someone (usually a family member) asks the court to find that a person is unable to manage his or her affairs effectively because of a disability. A guardian steps in the shoes of the person with a disability and makes the decisions for them.
The process to set up a guardianship can be long and expensive and is not a decision to be taken lightly. There are different types of guardianship depending on the person’s needs. Generally, there is a guardian of the person and guardian of the property and one person can serve as both.
A guardian of the person can make decisions about a person’s healthcare, housing, food, clothing, and other subjects that affect the person.
A guardian of the property makes decisions about a person’s money, income, property, public benefits, and other financial matters.
Who may be a guardian?
Any person 18 years of age or older may be a guardian; the harder question is who should be the guardian. Often parents will petition the probate or surrogate court to be the guardians of their child and usually, the petition is granted. Sometimes the court will appoint one parent as guardian, other times both parents will be appointed as co-guardians. In some cases where the parents of the child do not live together and cannot agree on who should be appointed as guardian, the proceedings may become contested, and the court will appoint an independent guardian. Likewise, if there are funds to be protected, the court may appoint an independent party to serve as the conservator if the family is unable to agree on the appointment. In some states, mediators are available to help the parents resolve the issues rather than having a contested hearing, which can be expensive and take a long time. With the court’s priority being the best interests of the child, it will often choose an independent guardian or conservator if the parents cannot get along, which is sure to leave both parents disappointed.
Parents should also take steps to name a successor guardian to serve after the parents have both died or are no longer able to care for the child.
Supplemental Security Income (SSI)
SSI is income is paid to individuals that have been determined to meet the definition of disabled as defined by the Social Security Administration. In 2019, the maximum federal benefit is $771/month per person. In most cases, the disabled person does not have an employment history. To pass the “test,” the disabled can own very little. They are limited to owning no more than $2,000 in assets, excluding a car and a home. Assets inside a third-party trust are not included. Gifts, cash or inheritances received directly by the disabled must be reported to the Social Security Administration.
ABLE Savings Accounts
Patterned after 529 college savings plans, ABLE savings accounts are tax-advantaged state savings plans for individuals with disabilities. They can be used for “qualified disability expenses” – any expense related to the designated beneficiary as a result of living a life with disabilities. These may include education, housing, transportation, employment training and support, assistive technology, personal support services, health care expenses, financial management, and administrative services and other expenses which help improve health, independence, and/or quality of life.
Limitations to ABLE accounts:
- The disability must have occurred prior to age 26.
- Only a parent, grandparent or guardian or a competent disabled person can establish one. (However, once the account is established, anyone can make a gift to it.)
- There can only be one ABLE account per disabled person and it can be funded only up to the annual federal gift tax exclusion ($15K in 2019).
- All funds are not counted as a resource for Medicaid; but only the first $100K is not counted for SSI eligibility. If the funds exceed $100K, then SSI benefits are “frozen” until the value of the account is below 100k.
- Once the ABLE account is established, when the disabled person dies, there is a Medicaid payback for the benefits provided for the disabled person.
- Finally, each state program has its own maximum funding limit.
Not all states are participating in ABLE programs, however, regardless of where you might live, you are free to enroll in any state’s program that accepts out-of-state residents.
More information, including a state-by-state comparison of programs, can be found on the ABLE National Resource Center website.
The Bottom Line
Caring and advocating for individuals with special needs is all about love and protection. It is important to review your planning options with a special needs attorney. Because special needs planning is so closely integrated with various aspects of retirement planning, estate planning, and often guardianship and conservatorship issues, it is imperative that you speak with a qualified attorney who is experienced in this type of planning.
Key Special Needs Planning Considerations
Financial Factors – Financial factors include mortgages and other expenses, insurance policies, investments, and savings.
- Take an inventory of your assets and liabilities
- Identify your expenses and sources of income today and in the future
- Find out the cost to provide the services your child will need for his or her lifetime
- Review your life insurance, long-term disability insurance, and long-term care insurance coverage’s for primary caregivers
- Build your own financial independence first
- It is important to begin saving for the future as soon as possible
Legal Factors – Legal factors include estate planning, weighing guardianship with less restrictive alternatives, and creating a Special Needs Trust to ensure a child’s future
Government Factors – Government factors include identifying and supplementing government benefits, such as residential services, supported employment, and respite care
Family and Support Factors – Family and support factors include family’s values, the parents’ careers, sibling considerations, and contributions of extended family members
Emotional Factors – Emotional factors such as dealing with both positive and negative feelings, staying connected with others, and using strong emotions to fuel advocacy
Common Mistakes in Special Needs Planning
- Procrastination: Putting off tough decisions is a common problem in estate planning. The problem is only magnified when it comes to providing essential planning for your special needs child or loved one.
- Disinheriting a special needs family member: Many families believe this step is necessary to ensure a special needs family member receives government benefits, but this step is not necessary with proper special needs planning.
- Establishing a general trust or non-specific Special Needs Trust: Your loved one needs a Special Needs Trust, which provides for their specific needs and receives specific tax and benefits eligibility treatment. Moreover, your family member has specific needs which require particularized planning solutions – not a “one size fits all” solution.
- Not inviting family to contribute to a Special Needs Trust: Other family members can assist in the future care of a special needs family member through contributions, or including the Special Needs Trust in their own estate plans.
- Relying on the rest of the family after you are gone: The only constant with family dynamics is that they change over time. There are often complicated emotional, financial, and timing considerations involved with committing to care for a special needs family member in the future. Without a specific plan and proper financial support in place, your loved one’s future is not secure.
- Choosing the wrong Successor Trustee: A major component of a Special Needs Trust is selecting a Successor Trustee to take over after you have passed. Too often, individuals who lack proper ethical standards due to greed or circumstances – even family members – will take advantage of their power over the Special Needs Trust.
Our attorneys understand the pitfalls of special needs planning and can help you avoid mistakes.
We’re Here to Help Secure the Best Future for Your Loved One
Special needs family members are like any other family member – they deserve love and care. But it takes more planning and resources to properly care for special needs children or loved ones. If you need to engage in special needs planning, we are here to help. Contact us by phone at (301) 468-3220 or online to schedule a special needs planning consultation.
Altman & Associates is a member of the Academy of Special Needs Planners.
For more information, visit their Special Needs Answer site.