Due to the fact that over 75% of adults with a disability live with their aging parents, and one million of those households in the United States are being managed by a parent over the age of 60, planning for the future needs to be discussed.
The obstacles to planning for the future can be many, but one of the most common is: “the status quo is working.” Parents enjoy having their adult child live with them, and the adult with a disability knows nothing different, and so all parties are comfortable with the situation.
When the status quo is shaken and a parent becomes ill or dies, underlying issues are exposed. Without a plan, chaos ensues and other family members, many times adult siblings, are forced to embark on emergency planning with no expertise and very little guidance.
Planning can be so overwhelming because the choices can seem endless, and the starting point is often unknown. When embarking on special needs planning, consider following these three steps.
Three steps to special needs planning
1. Identify your team
a. Select an expert guide: This person or organization will have the expertise, specialization, and knowledge to coordinate and manage the pieces of your plan to provide the best level of support for your loved one
b. Manager of daily life: This person, people, and/or organization will handle day-to-day life, including living arrangements, transportation, volunteer activities, employment, recreation, and more. This area is often multi-pronged and will involve family members who make final decisions and organizations that can carry out many of the daily activities
c. Financial management: This area may also require a team. You may have a family member that will make final decisions regarding money, but you will also have them supported by experts to help them in carrying out decisions in the proper way, especially when it comes to managing a Special Needs Trust and/ or an ABLE Account.
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Financial management will also include managing the benefits from the government, which will include being a Representative Payee and keeping up with the associated paperwork and reporting
2. Financial and legal planning
a. As part of your plan, you will need to
I. Determine the cost of your loved one’s lifetime support needs
II. Identify the available resources. These resources can be from the parents’ income and assets, family members, the individual with the disability’s income and assets, and government benefits
III. Understand the risks associated with these resources, including the government changing the rules on their benefit programs, tax legislation changes, market volatility, and the increased cost of care
b. Designing the proper legal procedure
I. Depending on the family situation, the legal structure will most likely include a Will, Special Needs Trust, Powers of Attorney, Health Care Power of Attorney, Living Will, and other legal tools that can assist the family in the proper management and execution of the plan
3. Share the plan
a. Write a Letter of Intent
I. The Letter of Intent is a written document that describes your loved one’s daily life, activities, interests, behaviors, diet, medical history, prescriptions, people involved in their life, and the goals they have for their life (including preferred living arrangement situations)
b. Team meeting
I. Schedule a time to bring the team together (either in person or through technology). In this way, all members of the team will meet one another, and more importantly, this meeting will provide clarity as to each member’s role and responsibility
Planning for the (future) support needs of your loved one with autism can seem daunting, but it is possible and more achievable than you know.
This article was featured in Issue 126 – Romantic Relationships and Autism