Adults with Lennox-Gastaut Syndrome

Regardless of an individual's disability, a parent will lose guardianship over their child once they turn 18 years old. Even if disabled, an adult is presumed to be competent unless otherwise deemed incompetent after a competency proceeding (a hearing that is held in state probate court to determine if a person is able to handle their own affairs). Therefore, it is necessary for families to familiarize themselves with the various legal options available to protect their child in adulthood. By obtaining legal guardianship once they turn 18, a parent will have the ability to legally handle their assets and make decisions that are in their child's best interest. In order to obtain guardianship for your child, a "guardianship petition" will need to be filed. There are different guardianship options available depending on the capabilities of the disabled individual. If the disabled person can not live on their own, manage their own medical and financial needs, or can be easily influenced by others, it is best to apply for full guardianship. If the disabled individual is capable of making some or limited decisions on their own, there may be consideration for limited guardianship, which will limit what you are responsible for and give the disabled individual more control.

When beginning the legal guardianship process, you will need copies of medical records and letters from doctors and teachers stating the limitations and capabilities of the individual. An attorney and a financial planner are also recommended, although not required.

Note: All states have different requirements for obtaining Guardianship and we recommend contacting an expert in your state of residence. (TX requires use of an attorney for guardianship)

Many parents find the subject of residential planning and future care to be overwhelming. However, a time may come when you will no longer be able to take care of your LGS loved one and will be faced with a dilemma as to who will continue their care. Perhaps you worry whether there are even programs or facilities that will provide enough protection and safety to meet your child's complicated medical and emotional needs. These fears are common in parents of adult children with disabilities, and you will find that you are not alone.

It's crucial not to assume that siblings or relatives will be available to provide care in the future. While it may be disheartening to realize that your family may not be able to guarantee ongoing support for your child, understanding this early on allows you to explore alternative options proactively. This foresight can help you make informed decisions that best serve your child's needs.
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Local agencies and case managers that oversee services for the disabled can help you understand the different residential options available. Wait-lists for residential placement are often very long, so it is important to make yourself known to your local service system, even if you think you won't need a residential option for another 10 years. Exploring the different residential options, even years before you are prepared to make the transition, will also help you to learn about what is available and how each facility operates.

Preparing for the transition into an adult home may be easier if everyone is acquainted with the staff and other residents beforehand. Many programs offer orientations or overnight respite in order to allow assimilation before the move. Engaging in social groups such as the Special Olympics or programs for adults with disabilities may also improve socialization and make the transition easier.

Future planning also involves encouraging your child to be as independent as possible and continuing to teach "life" skills. It is extremely important that you feel comfortable with your loved one's residential home, not just for your child's safety, but also for your own peace of mind.

Long term financial planning is essential in order to ensure that your child will receive benefits entitled to them when you are no longer able to provide care. Delaying or avoiding the estate planning is a mistake that could put your child at risk. Individuals with special needs who receive Medicaid and other benefits maintain eligibility in the program as long as they do not have more than $2,000 in their own name. Therefore, leaving an inheritance to an individual who is enrolled in the Medicaid program will inevitably void their eligibility. Creating a special needs trust for your child is one way to avoid endangering the eligibility for government programs.

Special needs trusts are created in your will and act as a receptacle for money earmarked for the child. Typically, special needs trusts are designed so that none of the money can be used for food, clothing and shelter - all services provided by government programs. However, the money may be used for amenities that government programs do not provide such as travel, entertainment, and recreation. [9]

COBRA has allowed disabled people under the age of 65 to remain eligible for Medicaid even if they receive an inheritance or other money in excess of $2,000, as long as that gain is placed into a trust. Also known as a "payback", the state is entitled to be paid back the full amount of Medicaid paid to the beneficiary in the event of their death if they leave any money behind. Another solution, one that can be used simultaneously with a special-needs Trust, is an OBRA Supplemental Trust. OBRA stands for the Omnibus Budget Reconciliation Act of 1993, the law that changed the Medicaid rules pertaining to the transfer of assets. Your attorney needs a thorough understanding of OBRA to help you set up this kind of Trust

Transition services are intended to prepare students to move from school to adulthood. IDEA (individuals with disabilities education act) requires that transition planning start by the time the student reaches age 16 but may begin earlier if the IEP (individualized education plans) team decides it would be appropriate. Post-secondary goals and transitions services are considered in IDEA and include further education, vocational training, independent living, employment, and community participation. These are the areas to be explored by the IEP team to determine which types of transition-related support and services a student with a disability needs. Planning ahead in these areas and developing goals for the student can greatly assist them in preparing for life after high school.

SSI is a program that pays monthly checks to people with disabilities (as well as the elderly and visually impaired) who have a lower income. Payments are made on the basis of financial need. Social Security Disability Insurance (SSDI) is based on a person's prior work history or their
parents' work history under Social Security.

A child may quality for disability benefits from birth to age 18 under the SSI program. However, when a child becomes an adult at age 18, different medical and non-medical rules are used to decide if an adult can get SSI disability payments. The income and resources of family members do not count when deciding whether an adult meets the financial limits for SSI. If your child is already receiving SSI payments, the child’s medical condition is reviewed when he or she turns age 18 and the "adult disability rules" are used to decide whether your 18-year-old is disabled. If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much income or resources, he or she may become eligible for SSI at age 18.

Living with LGS is a marathon, not a sprint.

Caring for an adult with LGS can be every bit as demanding as caring for a child with LGS, and the need for support is great.  Not only do the needs of the individual with LGS change in adulthood, but, so, too, do the needs of aging caregivers.  We invite parents and caregivers of adults with LGS to join us for discussion and support as together we face the ever-changing challenges associated with LGS. (Parents of adolescents are also welcome to join the support group.)

Adult caregivers, Geraldine and Elizabeth host a monthly support group meetup to discuss the challenges associated with caring for an adult with Lennox-Gastaut Syndrome.

This monthly group is available to LGS families who are members of the LGS Foundation Online Caregiver Support Community.

To join our online community and for login information, please visit our group at www.facebook.com/groups/lgsfoundation

Respite care provides short term breaks that relieve stress, restore energy, and promote balance in your life. Working with family members or friends may be difficult, but there are many respite care options and strategies that you may not be aware of. Using respite allows you to receive support, share the responsibility of caregiving, and maintain your own health.

In-home respite: As a caregiver, you have the option to stay at home with your child while a provider can help with daily tasks. This type of respite can be received occasionally or on a regular basis and can be set up by your caseworker or provided by volunteers.

Residential programs: Residential programs offer temporary care for varying lengths of time. Facilities such as hospitals, group homes and nursing homes can provide emergency or planned overnight stays, giving caregivers 24-hour relief. Although medical insurance generally
does not cover overnight respite, long term care policies may subsidize care.

Independent providers: Independent providers are generally the least expensive but extensive research may be required in order to find one you trust. It is important to conduct in-depth interviews, discuss compensation, request references, and be specific about your child's
needs.

Home care agencies: Home care agencies are often easier to use when looking for a respite provider. Typically, agencies will conduct background checks before hiring personnel. They will also find a provider for you, handle payroll, and provide a replacement in case of sick or
absent personnel. Agencies also handle other issues such as medication, complaints or arbitration.

More information on respite care can be found at http://www.helpguide.org/elder/respite_care.htm