We recommend that a comprehensive, detailed LifePLAN be created for every individual living with a disability. It will document that individual’s unique history, the family’s concerns about their loved one, and their wishes for their loved one for the future. A LifePLAN is meant to provide a blueprint for future caregivers, which can be a tremendous help when responsibility for that individual transfers from the original primary caregiver. Yet often, people find they haven’t done the planning that they know they must do. Do any of these statements sound familiar?
“We’ve got plenty of time!”
People are generally reluctant to accept their own mortality. Any of us could die at any moment, with no warning. Therefore the time we have should be used as an advantage, not an excuse. Use the time you have to start planning. As more time goes by, use it to revise the plan as appropriate.
“We’re so busy with current education, housing, and medical issues and crises that there is no energy left for considering the future.”
This is perfectly understandable. The problem is, there will always be things to do and crises to deal with that make it difficult to focus on the future. Make time to do so, even if other things have to wait. Think of it this way – once you are gone, someone else will have to deal with those issues and if there are no plans in place, they will be flying blind.
“I just pray that he/she dies before me.”
It is hard to imagine that a child with a disability will most likely outlive his or her parents. people with disabilities often have the same life expectancy as those without. Plan as if your child will live to a ripe old age. The purpose of planning is ensure that this ‘ripe old age’ is as comfortable and happy as possible.
“My other son/daughter will take care of everything.”
Believe it or not, siblings may not want the responsibility of caring for their brother or sister. Ask your other children about their expectations for the future. Recognize that they are likely to have their own families, careers, homes, and other responsibilities, and may not be able to act as a guardian or caregiver in your absence.
“I must have a “perfect plan” that will include solutions to all possible problems.”
The perfect scenario involves you being around forever for your child. This is not likely to happen, so develop the best plan possible with what you have to work with. Something is much better than nothing.
“Once we create a plan of action, it is permanent, and cannot be changed.”
Parents can be put off by the term “irrevocable” as it applies to a special needs trust. However, your Will, trust and other plans can be changed as long as you are alive. Remember that a trust is irrevocable only after it is funded, not once it is drafted.
“I have a Will and a Special Needs Trust. Why do I need a LifePLAN too?”
Legal documents alone won’t ensure quality of life. A Will and a Special Needs Trust will provide direction on legal issues and financial issues. They will not provide your child’s future caregivers with the detailed knowledge about your child that only you have. Take the time to document your child’s history, preferences, wishes and needs, so that people caring and advocating for him or her in the future will have something to work from.
“I’m sure that the state’s disability and mental health service systems guarantee quality services for my child, so there is no need for additional monitoring.”
As a parent, you check up on the providers of medical, residential, vocational, educational and other services to your child. If something goes wrong, you make sure it gets fixed.
Who will do that if you are no longer around? Unfortunately, not all providers recognize a “moral obligation” to provide good services to an individual whose family is gone. More often the opposite happens – those who have no one to advocate for them get inferior services. As the old saying goes, the squeaky wheel gets the grease.
“No one can care for her as well as I can.”
This is one hundred percent true – and absolutely not an excuse to avoid planning. Help your child’s future caregivers to do what you do, by arming them with the information you have about your child through a comprehensive LifePLAN.
The challenges to planning for your loved one may seem overwhelming, but when taken step by step in partnership with Planned Lifetime Assistance of New Jersey (PLAN/NJ), you’ll begin to move past these barriers and complete this necessary effort. Contact PLAN/NJ at 908-575- 8300 when ready to answer the question, “Who will care for my loved one when I’m gone?”