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Last month I talked about things you need to consider when your child turns 18, Your Child Is Considered An Adult. Now What? (part 1). This month I would like to look at additional considerations you will need to look at if your child has special needs or a disability. As many of you know I have a daughter with special needs and she will be turning 18 before we know it!
The biggest and most important decision is how to handle your child’s- soon to be adult’s rights and responsibilities. Will you need to seek guardianship, conservatorship or is Supported Decision Making the right fit for your family? Are you familiar with Support Decision Making and how your state recognizes this growing area of support? Guardianship is the most restrictive and Supported Decision Making is the least restrictive. Only you and your family know the best course of action needed to support you child. Working with an attorney who is versed in this area of estate planning is critical. They can help you determine the best situation and help you way the pros and cons.
Are your estate planning documents up to date. Have you done the proper special needs and estate planning for your child should they pass away?
The below information is from the Parent Education Advocacy Training Center (PEATC) https://peatc.org/ and is specific to Virginia. PEATC has done such a great job in this area and is truly the most comprehensive resource I have found. If you have not attended their Transition University. Please do! They have a whole section on Supported Decision Making as well as other options.
Beyond this difficult and emotional decision, here are a few other thoughts to keep in mind:
Previously, I listed forms you may need to be part of your adult child’s medical care or if they are unable to make their own medical decisions, but we didn’t discuss transitioning their health care from a pediatric physician to an adult practice. When your child has special needs and/or disabilities it is often a lengthy process to find the right doctor. You have to consider their specialty, accessibility, insurance accepted and especially their “fit” for your child. Be sure to have a discussion with your child’s physicians, if they specialize in pediatrics, whether or not they will continue seeing your child after 18. Some doctors will stop at 18, some will go until graduation and some will transition even longer. It’s best to have recommendations and setting the wheels in motion before anything becomes urgent.
Other to consider regarding their medical care:
- If your child can provide informed consent, consider having them sign an advance health care directive, naming you as the Representative for Health Care Decisions. An advance directive is a written document in which people specify how medical decisions affecting them (which can cover both physical and mental health) are to be made if they are unable to make them, and/or authorize a specific person to make such decisions for them. Most hospitals have blank forms, and you can download forms on the Internet. The disAbility Law Center of Virginia www.dlcv.org also helps people with disabilities who want advance directives.
- Decide if you should apply for Medicaid for your child at your local Department of Social Services office. Medicaid, a program funded by the federal and state governments is a health insurance program for eligible low-income adults, children, pregnant women, seniors, and people with disabilities. For further information about Virginia’s medical assistance programs. Virginia has implemented federal Medicaid expansion so more people are eligible than ever before. http://www.dss.virginia.gov/benefit/medical_assistance/index.cgi
- If your child isn’t already receiving services through a Medicaid Home and Community Based Waiver and/or is not currently on a waiting list for a Waiver, decide if they should be screened for one of the Waivers. Virginia’s Medicaid Waivers provide long-term services and supports that enable individuals with developmental and related disabilities to receive the services and supports they need at home or in the community rather than in an institutional setting.
- The Developmental Disabilities (DD) waivers have the most comprehensive services but also have a lengthy waiting list. The Commonwealth Coordinated Care (CCC) Plus waiver has more limited services but does not currently have a waiting list. Eligibility requirements vary and applicants must meet disability and income/resource requirements to qualify. For further information go to: https://www.dmas.virginia.gov/for-members/waivers/ If your child is on a Medicaid Waiver waitlist, make sure to contact your waiver case manager when your child turns 18, and talk about how that affects their priority level on the waitlist.
If your child does not already have formal identification whether if be a diver’s license, state ID or passport be sure to get one. It is important for all adults to have formal ID. Remember as of May 3rd, 2023 a REAL ID will be needed to travel domestically on an airline.
The information provided below is specific to Virginia, but the below items are things you will want to consider for your adult child. Please look at your specific state for their respective policies.
- If your teen has an IEP, verify with your child’s case manager or school counselor the anticipated “graduation,” or exit date from high school. If your child is not working toward a Standard or Advanced Studies Diploma, they can choose to remain in school up through the year of their 22nd birthday. Students with IEPs working towards a Standard or Advanced diploma must exit school upon completion of the diploma or by their 22nd birthday, whichever comes first.
- Decide if you need to apply to be your child’s Educational Representative. An educational representative is a competent adult authorized to make educational decisions on behalf of an adult student. Some students will be able to make educational decisions on their own, while others will need assistance. Further information on the transfer of rights for students with disabilities in Virginia can be found in this Virginia Department of Education Technical Assistance Document. https://www.doe.virginia.gov/special_ed/transition_svcs/transfer-ofrights-for-students-with-disabilities.docx
- If your child will be heading to college, make sure to check out the disability support services that are available at the college or university being considered. Your child can also talk with their school guidance counselor about college options. Individuals who are pursuing an employment goal that requires college may be eligible for support from DARS.
- Look into connecting with vocational rehabilitation. The Virginia Department for Aging and Rehabilitative Services (DARS) and the Department for the Blind and Vision Impaired (DBVI) provide services such as pre-employment transition (Pre-ETS services) to students ages 14-21, vocational assessments, training, and employment supports. DARS also operates the Wilson Workforce Center which provides employment training opportunities for eligible individuals.
- Find more information about DARS at https://dars.virginia.gov/ and DBVI at https://www.vdbvi.org. Sometimes individuals and families are worried about the effect of work on benefits such as SSI, Medicaid, and Medicaid waivers. However, there are programs in place that allow adults with disabilities to work and maintain critical benefits. To access free counseling on work incentives and develop a plan BEFORE your child starts working you can call the Ticket To Work Help Line at 1-866-968-7842.
Decide if your child should apply for Supplemental Security Income (SSI). SSI is a federally funded, needs-based disability program for adults and children which provides monthly cash benefits. The applicant must meet disability and income requirements to qualify. As an adult, your child is no longer required to list your income. Your child can apply as soon as the month after the child turns 18. Having Social Security recognize the disability prior to age 26 can be critical to future access. So even if you do not need the money now to support your child, apply not doing so could be very costly in the future. Further information about SSI can be found at: http://www.socialsecurity.gov/pgm/ssi.htm
Investigate independent housing opportunities such as voucher programs available to those 18 and older, including a specific program for those who receive waiver services or who are on the waiver waiting list http://dbhds.virginia.gov/developmental-services/housing/housing-choice-voucher.
As parents we spend the first 18 years of our children’s lives preparing them for adulthood, but when our children have special needs and/or disabilities there is so much more involved based on their individual circumstances. My hope is that this article provides you with some insight and resources for your Special Needs young adult.
Next month will have one more installment in this series on assisting your young adult with financial planning. It’s never to early for them to start taking control of their financial future!
If you have an question or I can assist you in anyway please reach. As always, I am here to help!