Autism Society records most keynote and concurrent sessions at their annual conferences. You can see and hear those recordings by purchasing full online access, or individual recordings.
The presentation will include three main subject areas to educate and help parents organize their affairs: (1) Special Needs Trusts and Preservation of Public Benefits; (2) Being a Kid and Becoming an Adult; and (3) Life after Mom and Dad.
For those people who have been found to be “disabled” under applicable law there are a number of public benefits that are generally available to persons with disabilities. Eligibility for a number of those benefits is “needs-based” or “means-tested” which translates to mean that strict income and asset limitations are imposed. Typically, the benefits people are most concerned with are Supplemental Security Income and Medicaid. With eligibility for Medicaid comes eligibility for Medicaid long-term care waiver services and supports, such as housing, vocational and case management services. The presentation will include a brief overview of the major public benefits that are of concern to parents of children with special needs.
With proper advance planning, families can provide for their child while ensuring that eligibility for public benefits is maintained. This can be done through the establishment of a Special Needs Trust. There are essentially three types of Special Needs Trusts: (A) Third Party Trusts; (B) First Party Trusts; and (C) Pooled Trusts. The presentation will discuss the various types of Special Needs Trusts and the circumstances under which each type of Special Needs Trust is appropriate. Information will also be discussed with parents regarding common issues such as when to set up s Special Needs Trust, successor trustees, appropriate trust expenditures, trust modifications and termination.
The second segment of the presentation will discuss the myriad of non-special education issues that parents may face as their child with autism grows up. The second segment will include a discussion of:
(A) Medicaid Waiver Programs – These are potentially available in many states to families with children on the autism spectrum under the age of 18, including “Katie Beckett” Waivers and other “Home and Community-Based Services” Waivers. These waiver programs vary from state to state, but can be a significant source of support to families.
(B) Autism Insurance Legislation – Fifteen states have already passed legislation requiring private insurance carriers to provide coverage for some type of autism services. Those states are: Arizona, Colorado, Connecticut, Florida, Illinois, Indiana, Louisiana, Montana, New Jersey, New Mexico, Pennsylvania, South Carolina, Texas, and Wisconsin. Another 30 states have some kind of autism insurance legislation effort under way. We will also discuss the new Federal law impact on individuals with disabilities.
(C) Guardianship – A guardianship may or may not be appropriate for an individual with autism who has reached the age of 18. If guardianship is warranted, there are a host of things that parents should take into consideration, including deciding upon, communicating with, and identifying successor guardians. In some instances, parents should investigate whether their state has an Office of Public Guardian if there is not an appropriate successor guardian.
(D) Powers of Attorneys – A power of attorney may be a better choice in a situation where the family member on the autism spectrum has a high level of independence, and needs only moderate assistance with managing his or her affairs. Powers of Attorney can cover educational rights, financial affairs and medical decision making.
(E) Adult Services – This is a broad category of Medicaid Waiver based services that can cover a range of services including case management services, community supports, employment supports, residential supports, respite care and crisis services. The variety and availability of these services can vary dramatically between states. In the current difficult economy, these types of services and supports are often the victims of budget cutting exercises by state legislatures trying to balance their budgets.
(F) Question: When should parents start thinking about the transition to adulthood? Answer: Now! – The presentation will offer parents suggestions on researching, organizing and advocating for appropriate services and programs for Adult Developmental Services. The sooner parents know that their state does not have an adult program that they desire, the sooner the parents can begin to organize and advocate for the services they want to be in place when their child ages out of special education services.
(G) ‘Know your APA’ and ‘FOIA is your Friend’ – All states and the federal government have adopted some form of the Administrative Procedures Act (“APA”) and some form of the Freedom of Information Act (“FOIA”). Parents should be aware of state agencies’ obligations under that state’s APA when it comes to implementing and administering Medicaid programs, as well as the parents rights to public information from those agencies under the state FOIA requirements.
(H) How to Exercise Your Legal Rights and Have People like You Anyway – Armed with knowledge of their own state’s APA/FOIA laws and a persistent, yet pleasant, demeanor, parents can obtain a mountain of useful public information that it not otherwise easily accessible. Parents will be given suggestions on how to work effectively with agency staff and service providers.
(I) Bringing Order Out of the Chaos – Parents of children and adults on the autism spectrum are, by necessity, multi-taskers. Parents will be provided with tips on how to become and remain organized regarding the multitude of programmatic and legal issues they will face throughout the life of their child.
The final portion of the presentation will help parents be as prepared as possible for the day when they are no longer available or able to continue their life’s work as parents to a special needs child. Although everyone hopes that such a day will come only after a long and healthy life, parents need to prepare for that day as though it is around the corner. This necessary step often involves the preparation and updating of a Letter of Intent or in some cases a more formal Life Care Plan. Parents must also make the effort to communicate with and educate those that follow them (whether as trustees, guardians or care givers) in supporting their adult child on the autism spectrum.
Content Area: Long-term Services and Support
Brian Rubin, J.D.
Attorney and father of a son with ASD
Rubin Law, A Professional Corporation
James A. Caffry, Esq.
Caffry Law, PLLC