Future and Special Needs Planning for Autistic Individuals | Organization for Autism Research

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Note to readers: In each issue of the OARacle, we provide a helpful resource on a topic of interest within the autism community. This month’s article focuses on long-term life planning for individuals with autism. Special thanks to Bart Stevens, ChLAP (Chartered Lifetime Assistance Planner), of Bart Stevens Special Needs Planning for his contribution. (The author has offered his expertise solely to provide information germane to the autism community. Inclusion of this article is intended strictly for that purpose and not as an endorsement of the author’s business.)

Raising a child with autism presents families with challenges in virtually every phase of the child’s development. Life planning, thinking about what will happen when the child survives his or her parents and becomes an adult, is something that parents must consider for the sake of their child as well as the rest of the family. The current thinking is that persons with autism live normal life spans. Therefore, most will typically survive their parents. Planning for their future care, supervision, security, and quality of life is no longer an option, it is a necessity. Among other concerns, families need to know where to begin as well as what tools and services are at their disposal.

When should a family begin planning? If you haven’t begun, start today. Whether your loved one is four or 40 years old, it is imperative that families create a plan. A parent never knows when they will no longer be here to care for their loved one. You wouldn’t leave your loved one for an afternoon without giving his or her care provider detailed instructions on how to reach you. To do less would be irresponsible.

In the same vein, if you die without plans for your child’s future care when you are no longer here, it will create many serious problems for your surviving spouse, other children, or relatives that could have been easily avoided with a plan. You must take action now.

Though it may be unfamiliar ground, don’t be afraid of planning. By making arrangements now, you are taking the concrete steps you need to take to ensure your loved one’s future.

Families intuitively understand the importance of preparing a plan, but few take the time and necessary steps to complete this process. Many families put off future planning because they don’t know how to begin or whom to turn to for assistance. Often, they are concerned about the cost or discouraged because it seems too difficult and overwhelming a process. Others mistakenly think they need a large estate to establish a Special Needs Trust. Some don’t have the time and are waiting to see what happens in the future.

But far too many things are left undecided when there is no plan. What will happen tomorrow morning if you are no longer here? Who is qualified to take your place? Do they know what type of services your son or daughter needs? Are they able to communicate with your loved one? Do they know your child’s daily activity schedule? Who provides the money for their care and where is it? How should assets and income be handled so as to avoid the person’s Supplemental Security Income (SSI) and Medicaid benefits being affected?

The care providers will have many questions. If you have left no instructions, who will they ask and how will they get answers? If you don’t prepare a plan, who will?

Your State and Federal Government do have plans for your loved one, but they are probably not ones you will like. They will choose the guardians and trustees for your child with special needs regardless of his or her age as well as all your children under age 18 and decide who gets your assets. Any assets received directly by your child with special needs may be reclaimed by Medicaid as a payback for previous services. You can avoid these situations by replacing the government’s plan with one of your own.

The planning process addresses four key subjects affecting the life of the person. They are Lifestyle, Legal, Financial Needs, and Government Benefits. A systematic approach will produce a comprehensive plan that includes a Letter of Intent, considers Wills and Special Needs Trusts, establishes the financial need, and addresses Guardianship and Government Benefit issues. Each is discussed below.

  • LIFESTYLE planning is where the family puts in writing what they want for the future of their loved one and instructions for their daily care. This information is recorded in a document called the, “Letter of Intent.” Although not a legal document, it is as important as the Will and Special Needs Trust. Imagine how much easier and less stressful it will be for the person with a disability and the care providers if they have this background and detailed instructions immediately available to them.
  • LEGAL planning enables the family to express their wishes as to the distribution of their assets and appoint Executors to settle their estate. In conjunction with this, a trust is usually created to provide professional money management, appoint successor trustees and guardians, maintain government benefits, and protect the assets left for the individual. It is important to note that not all assets pass through a Will. Life insurance, annuities, IRAs and 401(k) funds pass by beneficiary designation in the policies or plans themselves. The “Irrevocable Special Needs Trust” is the most commonly used document to provide supplemental funds for the exclusive benefit of the person with a disability. When properly drafted, the assets are not considered in the name of the person, so they will not cause the loss of Supplemental Security Income (SSI) and health care benefits. In addition, these funds are not exposed to repayment of Medicaid benefits. This Trust has proven invaluable to families regardless of the size of their estate or the amount of assets they are leaving for the person. This Trust enables the parents to appoint Trustees to manage these funds in the future after their deaths or when unable themselves to perform this function.
  • FINANCIAL NEEDS planning determines the supplemental needs of the person. First a monthly budget is established based on today’s needs while projecting for the future. Then by using a reasonable rate of return on principal, the family calculates how much money will be needed to fund the trust. This process takes into account the life expectancy of the person and then uses an inflation factor to project the future financial need.
  • GOVERNMENT ENTITLEMENTS are for many persons the only or primary source of income and benefits. The cash and health care benefits are received through Supplemental Security Income (SSI), Social Security Administration (SSA), Social Security Disability Insurance (SSDI), Medicaid, and/or Medicare. A basic understanding of federal and state entitlement programs is essential in order to be sure that the person gets all that they are eligible to receive.

Completing a comprehensive plan ensures that your special needs child will receive lifetime supervision and care and maintain government benefits. When done properly, the plan includes provisions for supplementary funds to help ensure a comfortable lifestyle, management of funds and dignified final arrangements. Its clarity leaves no question as to your final wishes, thus helping to avoid family conflict. And, its thoroughness has a dual benefit. It provides for your autistic son or daughter and it removes that burden from your spouse and remaining family members.

Once you have developed a plan and established a Special Needs Trust, don’t forget to notify your family and close friends. This is a key item commonly overlooked. If grandparents, aunts and uncles, friends, and others have named the person with special needs as a beneficiary or heir directly rather than the trust, it could have a very negative effect on the plan. They need to know that if they are designating anything for your autistic son or daughter, they should will it to the Special Needs Trust.

No one knows the requirements of a person with special needs better than the immediate family and care providers. It is essential that their knowledge, as it pertains to the care of their loved one, be recorded so that both the future providers and the person with special needs experience as smooth and stress-free a transition as possible.

Now that you understand the need for planning, where and how do you begin? Even with this knowledge and information, most families need professional assistance in this process. This often becomes a roadblock because families don’t know whom to turn to for guidance and have concerns about how much it will cost. There are usually several professionals involved: attorneys for the legal aspects of the plan and financial advisors, investment consultants and insurance agents to assist in the various aspects of funding the plan. Some may have limited or no experience or knowledge of special needs planning, so be sure to ask. There are also certified Lifetime Assistance Planners for Special Needs who specialize in working with families and coordinating with these other professionals to ensure that all components of the plan are synchronized and in proper order. Whomever you choose to consult, be sure to ask about their qualifications and experience with special needs matters regardless of their position or title, and don’t hesitate to ask for references. Don’t assume anything. This is too important.
The plans you make today will provide for your loved one throughout his or her entire life. Your wishes, caring and guidance will be conveyed to him or her through your written words and videos. No amount of planning or the people who come after you will ever fully substitute the love you give to your child, but the special care that will continue with your instructions will be a constant reminder and lifelong gift. Now is the time. You have the knowledge and the tools to proceed to provide an extraordinary gift for your loved one.

For more information on special needs planning or Bart Steven Special Needs Planning, e-mail Bart at info@bssnp.com or visit http://www.bssnp.com/.

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