If you currently care for a loved one with special needs (such as mental or physical disability), you must worry about what may happen to them when you are no longer able to provide and care for them. Besides providing for them in your Will or Trust, you should be aware of the following:
A. When the disabled is under the age of 18:
1.) Dealing with the school:
Parents will have to advocate for their special needs child with teachers and school administration. Often an Individual Education Plan (“IEP”) or Section 504 plan will be created for the child.
Before meeting with the school, parents should learn as much as they can about how their child is functioning and what he/she needs. Parents should understand the difference between goals and objectives on IEPs and what is realistic and measurable. Finally, before attending the meeting, parents should be knowledgeable about accommodations and services that the child needs and what may be available from the school. Parents can be assisted by an education consultant or by an attorney.
2.) Keeping information on daily routine for when you are not around:
Parents should also keep a detailed report and update it often to provide information on the child’s routine, what the child likes to do, tips for enhancing communication, as well as contact information of health care providers and doctors.
B. When the disabled reaches the age of 18:
When a special-needs child turns 18 years of age, several steps need to be taken since you, the parent, are no longer automatically the guardian. In addition, you will need a plan to maximize your benefit options.
Parents are the natural guardians of the minor and do not need to be appointed guardian until the disabled reaches 18 years of age. However, when the special-needs child reaches 18 years of age, steps need to be taken in order to care for the child. If the young adult has some degree of capacity, he/she can execute a HIPAA release and an Advance Medical Directive in order to allow you, the parent, to continue to care and make medical decisions for them. If the young adult cannot execute these documents, a petition for guardianship should be sought. This petition can be started 6 months before the child turns 18.
On the financial side, a petition for conservatorship is not always necessary. If the young adult’s only source of income is Social Security Insurance (SSI), then the parents can be named “representative payee” by the Social Security Administration.
If the young adult has some sort of capacity, which is presumed unless determined incapacitated by a Court, the execution of a power-of-attorney may be sufficient. It is recommended to include in the power of attorney document a specific right to make decisions on educational matters, in order to reinforce the power of the parents when dealing with the teachers and school administrators.
In other situations, the parents will have to petition the court to be appointed conservator of the estate of the young disabled adult.
C. Special Needs Trusts:
While you can certainly provide that your loved ones receive money and assets, such a bequest may prevent them from qualifying for essential benefits under the Supplemental Security Income (SSI) and Medicaid programs. However, public monetary benefits provide only for the bare necessities such as food, housing and clothing. As you can imagine, these limited benefits will not provide those loved ones with the resources that would allow them to enjoy a richer quality of life. But if parents leave any assets to their child who is receiving public benefits, they run the risk of disqualifying the child from receiving them. Fortunately, the government has established rules allowing assets to be held in trust, called a “Special Needs” or “Supplemental Needs” Trust for a recipient of SSI and Medicaid, as long as certain requirements are met.
2.) Use of a Special Needs Trust:
The Special Needs Trust can be used for a variety of life-enhancing expenditures without compromising your loved ones’ eligibility such as:
- Annual check-ups at an independent medical facility
- Attendance of religious services
- Supplemental education and tutoring
- Out-of-pocket medical and dental expenses
- Transportation (including purchase of a vehicle)
- Maintenance of vehicles
- Purchase materials for a hobby or recreational activity
- Funds for trips or vacations
- Funds for entertainment such as movies, shows or ballgames
- Purchase of goods and services that add pleasure and quality to life: computers, videos, furniture, or electronics
- Athletic training or competitions
- Special dietary needs
- Personal care attendant or escort
For further information, please call Miorini Law, PLLC at (703) 448-6121 or send an email to email@example.com