This information was supplied by Craig Marcott, Special Needs Consultant and Financial Planner.

Action Steps to Help You Prepare

  • Organize all of your documents (IEPs, ISPs, legal papers, financial statements, insurance policies, etc.) in a binder or folder. Make certain that the appropriate people (executor, future trustees, beneficiaries, etc.) know where to find it.
  • Keep informed of changes in services for the disabled population. You will want to be aware of opportunities as they present themselves.
  • Health insurance: If you want your child to have access to doctors out-of-network, you may need to purchase private insurance. Stay abreast of changes in this area.
  • Housing: More people want more choices for their special needs child. You need to be financially prepared to take advantage of future opportunities.
  • Network: Join agencies and committees. Contribute your time and energy. If you're good at fundraising, get involved. Anyone who can bring in donations to agencies is a valuable resource and will have more opportunities for their special needs child.
  • Join or create a support group. Support groups are a great resource of ideas and experience. Other people have already traveled down your road. Let them help you. Then help others. Members of support groups can also assist each other with transportation and keep you informed as to what's going on in the special needs community. No one can know it all.

Guardianship: Why, When, How?

Did you know that once your child attains age 18, you no longer have the legal right to make medical and dental decisions for him or her? The state of New York assumes that your child has the capability to make those decisions for himself, no matter how cognitively impaired your child may be.

If your child is incapable of making medical decisions, there are significant reasons for considering guardianship of your child. Here are a few:

  • You need to have access to your child’s doctors and want the legal right to make healthcare decisions for your child if necessary
  • Your child requires surgery or other medical attention and the hospital wants proof you are the guardian
  • Physicians and other health care providers are getting more strict about allowing you as a parent to make medical decisions (without guardianship) due to litigation exposure and HIPPA regulations
  • You want to have access to your child’s medical records
  • You require medical information from your child’s Insurance company and they will not release it without proof of guardianship

Most guardianship petitions for the developmentally disabled are pursued through Surrogate’s Court. This is referred to as a 17-A Guardianship Petition. The process typically takes 6–8 months and can be initiated prior to your child becoming 18. The 17-A Guardianship can be attempted on your own (pro se) although the paperwork is considered by many to be burdensome and onerous. Many parents hire an attorney to represent them, but that can be a more expensive option.

An alternative to these approaches is to have someone knowledgeable assist you in the process. This person processes the petition similar to the attorney, but does not provide legal advice. This option can be a cost-effective manner of obtaining guardianship and the legal right to make medical decisions for your special needs child.

When Your Child Ages Out

When your child ages out of the public school system at age 21, your child will enter the world of adult services. Examples of these services are group homes, independent living with support, rehabilitation day programs, residential habilitation programs, respite and a variety of other services. It is therefore imperative that you understand the difference betweeneligibility and entitlement.

While your child is in the public school system, your child is entitled to certain rights and services. You and your child’s public school may differ as to precisely what your child is entitled to, but once agreed-upon, your child receives those services.

In the world of adult services, however, the question is more of eligibility. For instance, your child must first prove that he or she meets theeligibility requirements for certain government programs such as Supplemental Security Income (SSI) and Medicaid. If your child meets all of the eligibility requirements for these programs, your child will be entitled to certain associated benefits which will make him or her “eligible” for adult services.

Let’s assume that it is determined that your child is entitled to Medicaid benefits. He or she may now be eligible for most of the adult services available in New York State. Being eligible, however, is a far cry from being entitled to those services. For example, your child may very well be eligible for a group home placement, but the chances of him or her actually being awarded such a placement is almost nonexistent. Why? The reason is that there are approximately 10,000 disabled individuals in New York State currently waiting for a similar placement. All of these individuals are eligible for group home placement, but none of them are entitled to it. See the difference? And so it goes with nearly all of the adult services.

In light of the federal debt and New York State’s fiscal crisis, Medicaid is almost certainly to be under continued attack for the foreseeable future. This translates to proposed cuts in Medicaid services for the cognitively impaired and developmentally disabled population.

Parents who have a child with a disability will bear a greater financial and emotional burden going forward then perhaps ever before. It is therefore imperative that parents begin to plan earlier than ever before.