Embarking on the caregiver journey for individuals with tuberous sclerosis complex (TSC) involves thoughtful consideration and planning. The sections below provide valuable insights into key aspects that caregivers often navigate.
Employment & vocation
For some people, participating in a vocational, educational, or other type of activity can be empowering and may provide purpose. Vocational and rehabilitation options for people with disabilities range from positions that provide high levels of assistance to competitive employment without additional accommodations.
Experience provided through work, job training or other enrichment activities may add to the quality of life and increase a person’s self-esteem. Additionally, social interactions with co-workers may enhance a person’s integration in the community. Often the challenge is not in performing the job, but in finding the job that best suits an individual’s interests, strengths, and personality.
One of the best places to begin a job search is with your state vocational rehabilitation (VR) agency. State VR agencies coordinate and provide a number of services for people with disabilities who are looking for a job. These services may include counseling, skills evaluation, training, job placement, coaching and support. Services provided vary by state, but most agencies will assign a vocational counselor to work with an individual with a disability to identify and locate employment options that best suit their capabilities, needs and interests. State VR agencies work with nonprofit organizations and private employers that may provide a wide range of employment options in a variety of settings. You can find your state or local VR agency by checking your state government websites or by visiting the Job Accommodation Network.
A guardianship – or conservatorship depending on the state – is a legal action that grants an adult legal power to make decisions for another person. Guardianship is a legal means for protecting adults who cannot take care of themselves, make decisions that are in their own best interest or handle their assets.
Generally, the natural guardianship of a minor child terminates at the age of 18, and the parent is no longer the child’s legal guardian regardless of a disability. Some adults with disabilities may not be able to give reasoned and well-informed consent when making a decision. Depending on the severity of the adult’s disability, setting up a guardianship may be an option.
However, keep in mind guardianships can be relatively inflexible as compared to less intrusive options such as trusts (described later in this section). When considering the different types of available financial planning tools, families will need to consider some of the following questions:
- Is the individual able to work? If so, to what extent?
- Is the individual able to manage small amounts of money on a monthly basis?
- Does the individual now or in the future need residential care?
- Can the individual live with a friend, relative or group home in the future?
- What are the estimated costs of these arrangements?
- What are the person’s recreation, leisure time and social needs?
- Does the person’s disability involve the possibility of deteriorating health and more involved health care needs and costs?
- What will the transportation costs for this individual be now and in the future?
The following is a brief description of the types of guardianships generally available:
- A Guardian of the Person is responsible for monitoring the care of the ward.
- A Guardian of the Estate or Conservatorship should be considered for persons with disabilities who are unable to manage their finances and who have income from sources other than benefit checks or have other assets and/or property.
- A Limited Guardianship may limit the guardian’s decision making to certain areas, such as decisions about medical treatment, to allow the ward to continue making his/her own decisions in all other areas.
- A Temporary Guardian or Conservator may be appointed in an emergency when certain decisions must be made immediately.
A letter of intent is an important accompanying document for guardianships. A letter of intent describes the person’s disability history, his/her current state and what future needs may be. This document is important as it provides guidance to the trustee regarding the family’s wishes for the family member with TSC in the future. To the maximum extent possible, involve the adult in the writing of this letter, so the letter truly represents his or her interests. Completing the letter of intent should be done as soon as possible and updated regularly to reflect any changes in a person’s health status or situation. This ensures the letter is ready at any moment should a parent become ill, become disabled or die. Although it is not legally binding, it provides direction for the person(s) who will care for the adult with special needs in the future.
Alternatives to guardianships
Parents, family members and/or other potential caregivers must carefully consider the disabled adult’s individual circumstances, including strengths/weaknesses, needs and interests, before deciding to seek guardianship. If the adult with a disability is capable of making some but not all decisions, some less-intrusive alternatives to guardianship listed below may be considered:
- A Representative Payee (often a family member, friend, or nonprofit agency) can be named to manage the funds of a person with a disability who receives government benefits checks, such as SSI and SSDI.
- A Durable Power of Attorney for Property is useful for individuals with mild or moderate disabilities who are capable of choosing another person to handle their money.
- A Durable Power of Attorney for Health Care or Medical Power of Attorney, also known as a Health Care Proxy, should be considered for individuals who are disabled and who can make some, but not all health care decisions. This is a legal document that enables a competent individual (the “principal”) to designate a health care agent to make health care decisions should the individual become incompetent to make them.
- An Appointment of Advocate and Authorization is a customized power of attorney that allows an individual with a disability to designate an agent to advocate on his/her behalf with administrative agencies such as the Department of Developmental Services, the Department of Human Services, Medicaid, local education authorities and any other state or federal agency from which an individual is receiving services.
As individuals and their families consider the different legal planning tools that will work best for their situation, keep in mind the Social Security Administration (SSA) will only speak with a representative payee with regard to a person’s benefit checks and will not speak with an agent who has been designated as a durable power of attorney for health care or advocate for the individual with a disability.
Residential & group homes
During the transition phase and estate planning, families ought to consider housing options that would best serve the needs of their loved one with tuberous sclerosis complex (TSC).
As these needs will vary among each individual and family it is important to research the options that are available in your area before the time they are needed. While all states receive federal funding to provide these services, options vary from state to state and even municipality to municipality. In some areas, the waitlist is incredibly long – all the more reason why this very important step should be considered proactively during life planning.
There are many things to consider when thinking about housing options such as independent living, independent living community, semi-independent, and institutional programs. Other options could include: 24-hour care facilities including nursing homes long-term living facilities known as LTAC, group homes, or supervised apartments. For those who would live at home there are other options such as skill development and adult day programs.
For those who are ready to learn more of these options please see the Young Adult Life Stages Guide and Adult Life Stages Guide below to get started. For more additional insight please reach out to one of our TSC Support Navigators to help answer direct further questions or concerns.
Estate & financial planning
What is estate and financial planning? This topic can seem overwhelming with the breadth of information available on the topic. This guide will help you get familiar with the process and prepare you to dive in deeper.
Estate and Financial planning typically go hand-in-hand but they are distinct from each other. Financial planning focuses on addressing long-term financial goals. A skilled financial planner can help customize your unique goals while mapping out a financial road map to achieve your goals. Estate planning, when conducted with the assistance of an estate planning attorney, helps protects your assets. An ideal estate plan should include a trust and living will. Estate planning may also include guardianship and conservatorship.
It is never too early to start planning for the future of your loved one. As with TSC, all estate and financial journeys are unique. There are some trusts that could potentially affect your loved one’s eligibility of benefits (e.g., Medicaid, Social Security Income, etc.), while others can be accessed for service reimbursement, leaving your loved one without a secure financial future. Having a firm understanding will help empower you to initiate the process and examine essential questions to help guide and reach your future goals giving you a peace of mind when you are no longer available to care for your loved one. MassMutual Special Care is a dedicated program that will create a holistic plan that goes beyond typical financial matters.
After you read the Life Stages Guides and are ready to take more action you can find additional resources at the Special Needs Alliance and for a quick, detailed understanding of special needs trusts from The National Law Review. In addition, here is a helpful article on how to initiate shared decision making with children who have a disability. For those who are active military or have been honorable discharged there could be additional benefits under the VA helpless child benefits. If you are military, you should seek additional counseling from a VA knowledgeable estate and financial planner. If you still have questions or concerns, please reach out to one of our TSC Support Navigators for additional guidance.
SUDEP stands for sudden unexpected death in epilepsy. It is a rare but fatal complication of epilepsy with no other known cause of death.
While the exact cause of SUDEP is unknown, there are ways you can lower your risk factors and incorporate SUDEP awareness as part of a healthy lifestyle. Empowering yourself or a loved one to take proactive steps is essential.
The most common risk factors of SUDEP include:
- Uncontrolled or frequent seizures
- Tonic-clonic seizures (previously referred to as “grand mal seizures”)
- Generalized compulsive seizures
- The age of seizure onset and number of years the individual has had epilepsy
- Medication compliance
- Sleep deprivation
- History of drug or alcohol use
We understand that this can be a very difficult thing to think about and conversation to have with both your loved ones, but awareness is key to Stop SUDEP occurring.
It is important to discuss SUDEP with your healthcare team as part of your overall epilepsy care and management plan, even if it is not something they bring up. As it can happen at any age, it is especially important to discuss during the transition phases of your journey, including college, group homes, independent living, healthcare sitters. Talking about it with your close family members and friends is also beneficial to increase awareness and decrease risk to the to your loved one.
There are efforts underway to improve SUDEP awareness and research and many resources available to help better understand this topic. More resources can be found at:
Reviewed by Ashley Pounders, MSN, FNP-C, Director of Medical Affairs, TSC Alliance, November 2023.
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