Based upon an ongoing need for information on this topic, we’re reposting this article from December 2023 that was authored by SNA member Sally L. Schoffstall, CELA. Sally is the founding member of the law firm Schoffstall Elder Law, LLC, and focuses her practice in the areas of elder and special needs planning law, guardianship, estate planning, and estate administration.
Planning for the future can feel daunting, but it doesn’t have to be. The key is to be proactive and set aside time as early as possible to consider how you want the future to look for yourself and a loved one with special needs. By taking the time carefully to plan now, you can ensure a smoother transition later.
Steps in the Planning Process
Proactively approaching the planning process can ease potential burdens down the line. That’s why it’s essential to start that planning as soon as possible. If you have a child or other family member with special needs, keep your own future health issues and care needs in mind and do not delay planning ahead for your own future as well as your child’s. In particular, delaying your child’s independence, especially in terms of their housing, is a disservice to your child.
It’s natural to procrastinate and hope for our own longevity, but should the unexpected happen to you, early planning and support will lay the foundation for a secure and fulfilling future for your child. While parents often lose sleep at night thinking of their own demise, they rarely consider the consequences of their own future disability and how that might impact their ability to be a caregiver for their child.
Transition planning involves various legal and financial considerations to ensure the well-being of individuals with disabilities. Arguably, the three most crucial topics to consider first are the following:
Establishing Means for Responsible Decision-Making: Guardianship and Power of Attorney
Guardianship is a legal process where an individual (the guardian), after a sometimes lengthy hearing, is appointed by the Court to make personal and/or financial decisions on behalf of someone with a disability (the ward) who is unable to comprehend these decisions on their own.
A Power of Attorney (POA) is a legal document signed by a competent person (the maker) granting authority to another person (the agent) to make decisions on behalf of the maker.
Choosing the most appropriate option as between a Court-appointed guardian and a chosen agent under a POA is a medical determination, and guardianship should be the path of last resort. In general, the legal age of majority is 18, so this topic should be addressed at least 6 months prior to your child’s 18th birthday.
Engaging in Long-Term Financial Planning
Securing a solid financial plan is essential to contributing to quality long-term care. Planning for the long-term financial security of an individual with special needs involves considerations like life insurance, investments, budgeting for ongoing care costs, and considerations of realistic future housing costs.
The best way to protect and secure these types of funding streams is by establishing trusts, such as a Special Needs Trust (SNT). Be sure you have a thorough understanding of the difference between 1st party and 3rd party SNTs. Also, be sure to consider the advantages and disadvantages of stand-alone and pooled SNTs.
All of these trusts are created to protect the individual’s eligibility for and retention of needs-based public benefits such as SSI, Medical Assistance, Food Stamps, etc., while also providing for supplemental needs and expenditures.
Solidifying the Continuation of Appropriately Supportive and Safe Housing
If you have a family member with special needs living with you, securing supportive and safe housing in the wake of an unexpected event is potentially a huge crisis that could have been averted by engaging in prior planning. Or, at the very least, with prior planning, it is a manageable problem as opposed to a major disaster. Housing discussions might involve modifications to your existing home or that of another supportive family member. Such discussions may involve finding alternate housing options that cater to individuals with special needs.
Prior to a crisis, make time to investigate residential options such as group homes or assisted living facilities that cater to individuals with special needs. Include considerations for funding these options in your long-term financial plan. Investigate government programs that provide housing assistance for individuals with disabilities.
Some programs offer financial support or subsidies to help cover housing costs. Be sure to consider the role of siblings or other family members in providing or supervising care and explore options for professional caregiving services if needed. Also, investigate local support groups or organizations that cater to individuals with special needs.
As parents age into their 60s, 70s, and 80s, their devotion to caring for their child with special needs is sadly often not matched by their realistic ability to do so in a manner that is safe for both them and their now adult child. In some instances, the child himself has reached retirement age. Planning ahead is essential for extended families to ensure a transition that maintains the child’s well-being, especially when parents can no longer provide care themselves.
This is where a Certified Elder Law Attorney (CELA) or attorney whose practice concentrates in elder and special needs law can be beneficial. These attorneys understand how public and private funding works, what services are available, and how to secure the best possible care for your family member with special needs.
Embracing a Team Approach
Whenever possible, including the individual with special needs in the planning process is always in their best interest. Their desires, aspirations, and vision for their own future should be of utmost consideration and incorporated into the overall plan. Establishing open communication channels among all interested family members is essential.
Special Needs Planning is a multifaceted journey that requires careful consideration of healthcare, housing, financial, and legal aspects. Embracing a team approach involving extended relatives, neighbors, and friends can provide the necessary support. By acting proactively, families can ensure a smooth transition for their loved ones with special needs, fostering independence and a fulfilling life. If you need help planning for the future for yourself or a loved one with special needs, please contact members of the Special Needs Alliance, who can help make the transition smoother.
About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney.
Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org
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