Recently a representative of the State, speaking at a presentation on New Jersey’s Medicaid Community Care Waiver, pointed out the importance of planning for your child’s future even if you do not have funding for services. He said that in the event of the need for an emergency placement, if the family has a plan, there will be a better chance of an individual ending up living the life their family would have wanted, than the alternative. Parents all fear what will happen to their child when they can no longer care for them. So, they fret about their number on the waiting list and fear what will happen in the event of an emergency placement. What most of us fear is that our child will end up in an institution. I’ve heard parents say that we are the only parents that hope that our children die before us. It is a depressing mindset that grows with each passing year of no answers and no options. It’s a terrible reality that we cannot help our children plan for a future when they are ready for it, but must rather plan for a day when disaster or disability strikes their parents. However, it is a fact of life right now. The only control we have is to do something proactive. Parents can make plans, figure out their options, and put it down in writing. If there is a plan in place, if it is a part of their will, a letter of intent, a signed document, it is much more possible that your wishes for your child’s future will actually come true. If your child should suddenly become in need of care outside of their home, and the people who have to provide that care have no direction, no plan to follow, they are going to take the path of least resistance – which may be an institution.
So, give yourself at least this bit of peace of mind. Make a plan regardless of your child’s funding status. If you feel that a group home could meet their needs – find a provider that you are comfortable with. Go out and shop providers if you have to. When you find one, let them know that you want them to provide residential services to your child when necessary. Make at least a yearly contact with them to let them know how your family is doing as well as checking on the health of the provider organization. Administrative changes can have an effect on the direction and quality of a provider
If you feel that self-directed supports would best suit your child’s needs, explore housing options, talk with family, the successor guardian or other people who can take over support coordination, become intimately acquainted with resources offered by both the federal and state governments. Meet with other parents whose children are using self-direction. They are a valuable resource in formulating a plan that will work.
Most importantly – write it down! Let the rest of your family know what should happen, how it should happen, and who to call if it doesn’t. Plan for the future. It is not a futile exercise. It may be the only insurance you can give your child….and yourself.