 | |||||
 | |||||
 | |||||
 | |||||
 | |||||
 | |||||
| |||||
| |||||
Why Haven't We Done Any Planning Yet?
Common Barriers to Planning
Do any of these sound familiar?
Reluctance to accept my mortality - "We've got plenty of time!"
Time 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.
Reluctance to recognize that I do not have to be old to die - "I'm only 45 - I'll worry about it when I'm (insert an age that's comfortably in the future)".
Any of us could die at any moment, with no warning. We all think it won't happen to us - even those to whom it DOES happen.
Reluctance to recognize that my child with a disability will most likely outlive his or her parents - "I just pray that he/she dies before me".
While this may have been true years ago, today 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 ripe old age is as comfortable and happy as possible.
Reluctance to believe that siblings may not want the responsibility of caring for their brother or sister - "My other son/daughter will take care of everything".
Siblings are often afraid to tell their parents that they do not want to end up being a "parent" to their brother or sister. Ask your other children (rather than telling them) about their expectations for the future and recognize that they are likely to have their own families, careers, homes, etc.
The desire for a "perfect plan" that will include solutions to all possible problems.
The perfect scenario involves you being around forever for your child. We've established that is not likely to happen, so develop the best plan possible with what you have to work with. Something is much better than nothing.
Reluctance to commit to a plan of action, for fear that such a plan is permanent and cannot be changed.
Your will, trust and other plans can be changed as long as you are alive. Parents get scared by the term "irrevocable" as it applies to a special needs trust. Remember that the trust is irrevocable only after it is funded, not once it is drafted.
The tendency to be so busy with education, housing, medical issues and crises that there is no energy left for considering the future.
This is perfectly understandable. 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.
The belief that legal documents alone will ensure quality of life - "I have a will and a special needs trust - why do I need a CarePLAN, too?"
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 you have, usually nowhere else but inside your head. 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.
The belief that state-sponsored disability and mental health service systems guarantee quality services and therefore 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 individuals 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.
The belief that no one can do it as well as I can.
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.
| ||
PLAN|NJ -