The death of a loved one is one of the most difficult situations anyone can experience. Not only do you have to deal with the normal feelings of grief and loss, but you also have to take care of the many critical decisions and arrangements that come with death.
And imagine this situation if you have a special needs child and if you were to die suddenly or become disabled. Dealing with these issues can be even more stressful for a special needs child. So it’s extremely important to have a plan for your special needs child’s future for such an eventuality. How will your child live the rest of his or her life, and who will take care of him or her? These steps will ensure that your child is in a position to live an independent life and that you have someone to turn to for help.
1. Write a Letter of Intent:
A letter of intent is an important tool to help your special needs child manage a difficult transition when you no longer are the primary caretaker. It helps guide your child’s future caretaker in making crucial decisions in your child’s life, including providing direction to your child’s trustee in case you have one to manage their financial responsibilities. A letter of intent intends to document all your special needs child’s needs to guide your child’s future guardians and trustees to provide and manage the best possible care to your child.
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2. Estate Planning
You need to get your estate planning in place. Things like the management of your finances and your health care when you are no longer capable of doing it. Get a trusted relative or a friend to manage your property and money and getting them to manage your bank accounts to sign checks or pay bills on your behalf. You may also think of giving them the power of attorney, which is a written document appointing the person to manage your bank accounts and your affairs.
But remember that a power of attorney is an extremely powerful document giving that person immense power over you and your finances. So it should be someone who you implicitly trust.
3.Get a last will and testament in place:
Families with special needs children should write a will: Writing a will is an important part of estate planning for everyone, but the process becomes even more important for people with special needs children. By writing a will, you ensure your wishes are met after you’re gone, and you protect your children from a system that might not understand them or may not be placing their needs paramount.
4. Special needs children should be protected by a Special Needs Trust
State agencies sometimes support special needs. However, these benefits rarely cover all the costs associated with the Special Needs Children’s needs. Having a Trust can help assure that your special needs child has the financial resources needed to cover some costs associated with their special needs. If the Special Needs Trust is drafted and administered properly, it can ensure a quality life for your child without affecting your child’s ability to continue to receive Medicaid and SSI. Get in touch with an attorney who is familiar with special needs trusts and disability benefits pertaining to your state/country.
5 Buy Life Insurance
Get yourself a life insurance policy that will provide money to take care of your child’s basic needs long after you are gone. Please remember that life insurance is cheaper the sooner you start in life. But the heart of life insurance is that your special needs child will always benefit from a policy that you have taken, no matter when you have done it.
6. Have a Guardianship plan
Please specify the custody and guardianship of your children in case you pass away before they reach adulthood. In case your child is above 18 and is no longer automatically under your care, then you must decide how you will respond by assuming guardianship or by getting services for your child by state.
Make sure that the person who will take on the “guardianship” care of your child is actively involved in their lives so that the transition is smooth in the circumstance rising thereof. Please ensure that the guardian is an active member of your child team and is comfortable to take over when they need to.
7. Periodical development assessment
Get a developmental assessment for your child periodically to see what level of care will be necessary when you are no longer around. Some may turn out independent adults needing someone to do a cursory check on them once in a while, while others may need continuous management. The assessment ensures that your child gets the appropriate level of care depending on their growth rate. If the child is developmentally impaired, then this part of the process is even more important as needs can change as the child ages.
8. Try to plan a life as consistently as possible
A periodical and a regular look at your plan is needed since circumstances will keep changing. So don’t look at it as ‘set in stone’. Revisit your plan and update your documents at least once every year. Preparing your child about losing a parent can be terrifying, but this is a task that needs to be planned so that it assuage your fears. That way your child is used to Plan B in advance to help them go through the transition of losing a parent.
9. Discuss death with your child
This might sound morbid, but an essential step especially for children with special needs. They often have a hard time understanding death and that this change is natural, and will happen eventually. Changes in routine can be very disturbing to these children, and death does change the lives of everyone involved. But preparing your child to understand death doesn’t need to morose; it can be factual or spiritual, depending on your beliefs. Encourage your child to share their beliefs and feelings so that they can work on it while you are still around.
Dealing with all these steps can overwhelm anyone but it is critical to take them as they will bring you peace of mind knowing that you have planned for the time when you may no longer manage your own or your child’s financial and health care issues. And when is the best time to start? Yesterday You don’t have to get everything done in a day but start somewhere and plan to finish in doable chunks.
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If you have not yet done estate planning or haven’t got a Special Needs Trust in place and you need more information, an excellent book to check out is “ What will happen to my Special Needs Child When I am Gone? “ by Susan Jules. It is available as an eBook and paperback.