Special Needs Parenting :: How to Plan for the Future - by Carey Nelson Handley

When you’re a parent of a child with Special Needs, sometimes getting through the day-to-day challenges your family faces takes as much energy as you can spare. It’s hard to think beyond the days, weeks and months to figure out how to help your child years from now but there are things you can put in place now that will be enormously helpful as time progresses. Special Needs parenting takes a lot of energy and forethought, much like successful chess players learn to think many moves ahead.

Unfortunately, many doctors and some schools aren’t well-versed in what happens beyond the school years and therefore don’t know how to counsel parents on things they can do early in children’s lives that will set things in motion for the future. Many times, it’s up to the parents to do their own research or ask the right questions to be set on the right course. Equally unfortunate is the hard truth that not addressing some of these things early will lead to extensive waiting lists and scrambling to figure things out when your child needs more immediate help.

One of the best things to help with future planning is to make sure your child is put on the Medicaid Waiver Interest Lists as soon as he or she is diagnosed with a disability that is likely to affect them throughout their lifetime. Medicaid Waivers are programs that will help offset costs and provide services to a child or adult with disabilities. Some programs on the list can be acquired in certain circumstances when your child is under 18 but many are for those who reach age 18 and are considered an adult. By researching Medicaid Waivers at the Texas Department of Health and Human Services, you can access information on the variety of Waivers like HCS (Home and Community Based Services), CLASS (Community Living and Support Services), MDCP (Medically Dependent Children Program) and more. It’s imperative you place your child on the Interest Lists of the program or programs that are appropriate for your child’s situation as many of the lists have waiting lists in excess of 10-15 years.

Keep in mind that if your child reaches the top of the list and he or she doesn’t need the services, you can reject them; however, if you wait too long to apply, the waiting period could be substantially longer. For example, we did not hear about the Waiver Lists until 2008, when our daughter was 14. Here we are, 12 years later as of this writing and we are still tens of thousands of numbers away from getting to the top of the list. Some of the services that these programs can help with are Occupational, Speech and Physical Therapies, Day Habilitation, Respite Care and more, depending on the program. Many families benefit greatly by these Waiver Programs.

Another thing to consider are the legal issues on how parents structure their Wills and whether they need to create a Special Needs Trust. It’s essential that no money or property be left to an individual with disabilities who may, at some point in his or her life, become eligible for SSI (Supplemental Security Income). There is a limit to the amount of assets an individual can have if they are receiving SSI. Going over that amount (currently $2000 for an individual or $3000 for couples) risks losing SSI. In the State of Texas, an individual receiving SSI also means they will receive Medicaid which is an important component of their benefits. When a person loses SSI, they will also lose Medicaid. It is possible to get both back as long as the assets are properly reduced to under the asset limit and the reduction is for the benefit for the individual with disabilities; however, it is a difficult and time-consuming chore. Special Needs Trusts and the ABLE (Achieving a Better Life Experience) account are two ways to assure continued receipt of government benefits. An attorney who concentrates on families with an individual with Special Needs like Boyd Handley of The Handley Law Office can give qualified information and establish a comprehensive family plan for the future constructed in the proper way. It is important to note that not all Trusts are Special Needs Trusts and that the language in a proper Special Needs Trust is very particular.

Looking at Guardianship or Alternative to Guardianship can wait until your child is in their mid-teens but this is something that should be researched and discussed well before your child turns 18. Once your child turns 18, they are an adult in Texas which means you technically cannot make decisions for them. Without having either Guardianship or an Alternative to Guardianship in place, your child can make financial, legal and medical decisions for themselves. Doctors do not have to discuss your child with you and your child can enter into contracts, decide where they want to live and leave home if they choose. Police and hospitals do not have to notify you if they have your child. For some young adults with Special Needs, this will not cause problems but for others, these are issues that your child should not (and maybe cannot) face alone. A qualified attorney can discuss Guardianship (full or partial) and the Alternatives to Guardianship with you and it’s best to have this discussion at least six months prior to your child’s 18th birthday.

While daily challenges may be daunting and it’s tempting to postpone looking too far into the future, it’s prudent to know your options and take early steps that will ease struggles that come as your child ages to adulthood. Contact The Handley Law Office at 281.703.3616 or Boyd@TheHandleyLawOffice.com to receive a complimentary planning document to understand suggested steps you can take from birth to 18 years old and from 18 years old through adulthood.

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