Choosing a potential guardian for a child is no easy task for any parent, but it may be even more difficult for a parent of child with special needs. In addition to things like "will my kids be comfortable in their home?" you also have to consider
- do the guardians live near my child's medical providers? do they live near better (or less stellar) medical providers?
- would the guardians be willing to learn the procedures necessary to care for my child's feeding tube, catheter, or other medical devices?
- could the guardians handle my child's hyperactivity or bi-polar disorder? are they willing to learn?
- have I left enough resources either through life insurance policies or other means so that the guardians could renovate their house to accommodate my child's wheelchair, pay for a nurse or other home help to come in and assist them in learning how to perform any special procedures, or even stop working to care for my child full time?
- have I spoken to the proposed guardian to make sure they are comfortable with taking on these additional responsibilities in the event of my death?
The proposed guardian does not have to be able to do all those things now, but they do need to love your child and be willing to learn to raise a child with special needs - whether they are medical, neurological, or a combination.
Another important thing to consider is having all of your child's medical information - diagnoses, doctors, therapists, surgeries, medications (with dosage, prescribing doctors, reason for medication), x-rays, cd's with MRI's or cat scans or endoscopies, IEP's, recommended books- gathered in a binder for your potential guardian, or in the event of any emergency where that information might be needed. Just make sure to keep it up to date.
I work with families of children with special needs to prepare for their future with special needs trusts, wills, guardianships and other planning tools.