Diane Pope       
P.O. Box 6028
Columbus, GA 31917
706 604 6333

Autism Hope Center

 

Future Planning

Ensuring quality of life for a loved one with autism requires a care plan with a sound legal and financial foundation.  The purpose of a special needs estate plan is to ensure the economic security and ongoing well-being of your family member, even when you’re no longer able to assume that responsibility.

A special needs estate plan should address:

• Guardianship – Guardianship is a potential issue at three points throughout your child’s life: while a minor, upon reaching the age of 18 and upon your death. During childhood, who would assume parental obligations in the event that you could no longer do so? Then, upon reaching the age of 18, will your child be in a position to make important legal, financial and educational decisions? If not, you will need to consider whether or not to establish yourself as legal guardian (in some states, referred to as a conservatorship for persons over 18) in order to continue to provide such assistance. If you do assume guardianship of your child once they legally become an adult, you will also need to name someone to take on those responsibilities upon your passing.

• Benefit Assessment – The financial security of many individuals with autism depends upon such public benefits as Medicaid and Supplemental Security Income (SSI). Based upon the services that your family member will require throughout life, a special needs attorney can help you determine eligibility for government assistance. Then, with the help of a financial advisor, you can establish savings and investment goals in order to provide additional funds needed to support the lifestyle you envision.

• Special Needs Trust (SNT) – In order to qualify for certain government benefits, an individual with disabilities must meet stringent standards for financial need. If your child will be dependent upon such public programs for medical care, housing, employment assistance or other services, you will probably wish to supplement the very basic levels of support provided.  Assets that are held by SNTs are not considered by the government when evaluating applications for means-tested programs.  In addition, an SNT is a good tool for ensuring that the assets set aside for an individual with disabilities are managed responsibly and not subject to creditors. There are several types of SNTs, depending upon who funds them and how they are administered.

• Letter of Intent (LOI) – While not a legal document, the letter of intent is essentially a roadmap providing guidance to guardians, trustees and others on how to care for your child when you are no longer able to fill that role. It includes medical, financial, legal and personal details, as well as your intentions concerning your child’s lifestyle.

 Powers of Attorney – If guardianship is inappropriate for your adult child, you may wish to consider less intrusive alternatives that name agents responsible for specific types of decision-making. Click here to learn more about healthcare proxies, financial powers of attorney and educational powers of attorney.

 Will – A will details your wishes concerning the disposition of your property upon death. It establishes what portion of your estate should be allocated to your child with disabilities and other heirs, and whether or not certain funds should be held by an SNT.

While there’s no such thing as a perfect plan, doing nothing is almost certainly a bad plan. The point is to create a flexible plan that can—and will—change over time to reflect events in the lives of all involved.

What is Autism ?

Autism Spectrum Disorder (ASD) refers to a group of developmental disabilities – including classic autism, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), and Asperger’s Syndrome – that affect a person’s ability to understand what they see, hear, and otherwise sense. It is a brain disorder that impacts communication, social interaction, and behavior.

Individuals with ASD typically have difficulty understanding verbal and nonverbal communication and learning appropriate ways of relating to other people, objects, and events. No two people with ASD are the same. As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity. Additionally, ASD is often found in combination with other disabilities.

What Causes ASD?
Although it was first identified in 1943, to this day no one knows exactly what causes ASD. However, research to discover its cause is ongoing. Many researchers believe that there is a strong genetic component. Some research suggests a physical problem that affects the parts of the brain that process language and information; other research points to an imbalance of brain chemicals. A variety of possible external or environmental triggers are also being studied. It is possible that ASD is caused by a combination of several factors.

Signs and Symptoms
People with ASD may have problems with social, behavioral, and communication skills. They might repeat behaviors and might not understand change in their daily activities. Many people with ASD also have different ways of learning, paying attention, or reacting to things.

A person with ASD might:
• have severe language deficits or differences;
• talk about or show interest in a restricted range of topics;
• not point at objects to show interest (point at an airplane flying over);
• not look at objects when another person points at them;
• have trouble relating to others or not have an interest in other people at all;
• avoid eye contact and want to be alone;
• have trouble understanding other people’s feelings or talking about their own feelings;
• prefer not to be held or cuddled or might cuddle only when they want to;
• appear to be unaware when other people talk to them but respond to other sounds;
• repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language (echolalia);
• have trouble expressing their needs using typical words or motions;
• laugh, cry, or show distress for no apparent reason;
• repeat actions over and over again;
• have trouble adapting when a routine changes;
• have unusual reactions to the way things smell, taste, look, feel, or sound;
• be oversensitive or under-sensitive to pain; and
• lose skills they once had (for instance, stop saying words they were once using)


Statistics
Autism Spectrum Disorder (ASD) is the second most common developmental disability following intellectual disability. ASD is more common than childhood cancer, cystic fibrosis, and multiple sclerosis combined. It is estimated that up to 1 out of every 68 children born today has some form of ASD.

It is estimated that approximately 1.5 million Americans (children and adults) have ASD today, and that more than 15 million Americans (loved ones, caregivers, educators, and health-care professionals) are directly impacted by the disorder.


The overall incidence of ASD is consistent around the globe, but it is five times more prevalent in boys than girls. ASD knows no racial, ethnic, or social boundaries, and family income, lifestyle, and educational levels do not affect the chance of occurrence. While ASD is typically diagnosed in children, it is a lifelong disorder that affects individuals of all ages.