Turning 18 is a milestone that comes with legal implications, including new rights and responsibilities. If you are the parent or guardian of an intellectually or developmentally disabled young adult, how do you guide your loved one through the transition into becoming an adult? How do you help them explore the independence of adulthood while avoiding the pitfalls?
Many of the important decisions that need to be made depend on your child’s needs. Some young adults with disabilities will not be able to make any decisions for themselves. Some will need varying levels of support with legal, financial, medical, and educational decisions. And for some individuals with disabilities, they will not necessarily need any direct support but maybe just the wise parental guidance that would apply to any young person entering adulthood.
Remember, turning 18 has a major impact on your young adult’s life, so make sure you involve them in the conversation as much as possible to understand their wants, needs, and goals. The following are 18 things you and your young adult must do or should consider doing as soon as possible after they turn 18:
- Obtain a State-Issued ID. Every adult needs a state-issued ID card or driver’s license if they don’t already have one. Even if your young adult will never be able to drive, take them to the Department of Motor Vehicles or Motor Vehicle Administration to get a state-issued ID card.
- Register to Vote. Adults have the right to vote, so be sure to help your young adult register and get them involved in the voting process, but remember that their vote is their own. Usually you can ask to register to vote by checking a box at the DMV or MVA when you obtain your driver’s license or state-issued ID.
- Register with Selective Service. Federal law requires all 18-year old men to register with Selective Service, a responsibility that brings the possibility of military service. There are exceptions for adults with severe disabilities who are institutionalized or cannot leave home, but even then an application for exemption must be filed. Women are still exempt from this federal requirement.
- Power of Attorney. All competent adults should have a general financial and legal Power of Attorney, because no one knows when something might happen rendering a competent adult unable to make decisions. When a child with an intellectual or developmental disability turns 18, parents can no longer legally make decisions on behalf of their young adult, regardless of the individual’s disability, capacity to make their own decisions, or whether they still live at home. In the school setting, parents are no longer automatically invited to participate in IEP (Individualized Education Program) meetings unless the young person approves. School staff will require proof of guardianship or a Power of Attorney that specifically addresses school-related decisions, including the right to participate in developing the child’s IEP and other very specific provisions under the Individuals with Disabilities Education Act (IDEA).
- Advance Medical Directive. All competent adults should have an advance medical directive addressing their wishes for medical care, or withholding of medical care, in the event that they cannot make decisions for themselves due to a medical event. This is true for you and your adult child with a disability.
- Consider a Supported Decision-Making Agreement along with Power of Attorney. Under the supported decision-making concept, your young adult with a disability has an agreement that documents who will support them and what those supports will look like. A supported decision-making (SDM) agreement formalizes an agreement between a person with a disability and those providing support. It looks different for everyone, depending on needs, and can change as necessary. Importantly, it demonstrates that a person with a disability has the capacity to make his or her own choices. Supported decision-making is intended to promote personal autonomy, choice, and independence. As Virginia, Maryland, and Washington, DC, recognize and support this approach, families who have an adult child with disabilities have the opportunity to take control of their lives while enjoying the necessary support to help make informed decisions. For more details on the legal framework regarding SDM in Virginia, Maryland, and Washington, DC, please click here.
- Guardianship and Conservatorship. If you believe your young adult with disabilities has zero capacity to manage their own legal, financial, and medical affairs or make any personal decisions, or if you think your young adult will make harmful decisions, then you will need to hire a special needs attorney to petition for Guardianship and Conservatorship. Just keep in mind that Guardianship and Conservatorship should always be thought of as a last resort, only if a Power of Attorney and advance medical directive, possibly with a supported decision-making agreement, will not be adequate.
- Education and Transition Services: Educational supports through the local school system don’t necessarily end at 18. Depending on the state you live in, educational and transitional services can continue to somewhere between 21 and 26 years of age under the Individuals with Disabilities Education Act (IDEA). The ongoing structure of attending school can help smooth the transition to adulthood. As a federal law, the IDEA requires states to provide special education and related services to students with disabilities until their 22nd birthday, but an exception allows states to discontinue services as early as age 18.
- Virginia IDEA Compliance: In Virginia, an individual with a disability can choose to remain in school up through the year of their 22nd birthday. Students with IEPs working toward a standard or advanced diploma must exit school upon completion of the diploma or by their 22nd birthday, whichever comes first.
- Maryland and Washington, DC IDEA Compliance: In Maryland and Washington, DC, students with disabilities are entitled to receive free and appropriate public education from birth until they leave high school or turn 21, whichever comes first. This includes individualized or special education services and related services.
- Consider Having Your Child Open an ABLE Account. If your child will be earning income or receiving gifts of money from any family members or inheritances, be sure to have your child establish an ABLE account. Money saved in an ABLE account is not counted for purposes of SSI and Medicaid eligibility but can be used by your child to purchase services and supports or anything else the child needs or desires.
- Employment Support Services are not overseen by local schools but rather by state agencies, such as the Medicaid department or vocational rehabilitation service. These services can be essential for your child to reach their full potential, get a good-paying job, and contribute to society. The following state-level agencies provide services such as pre-employment transition, vocational assessments, training, and employment supports for residents of Virginia, Maryland, and DC:
- The Virginia Department for Aging and Rehabilitative Services (DARS),
- Maryland Department of Rehabilitation Services (DORS), and
- DC Department on Disability Services
- There may be a waiting list to receive transition services. This is one of the reasons it’s important you begin exploring options for your child before their IDEA education support ends.
- If your child will be heading to college, make sure to check out the disability support services that are available at most colleges and universities. Your child can also talk with their school guidance counselor about college options.
- Apply for SSI and Medicaid Health Coverage if you think your child will never work or will only be able to hold a very low paying job. Confusingly, SSI stands for Supplemental Security Income, NOT Social Security Income, and is a program that is federally run by the Social Security Administration even though it is not Social Security. SSI provides needs-based disability program for adults and children. It provides a monthly cash benefit for adults who have less than $2,000 of countable assets. Your child must meet disability and income requirements to qualify. Your young adult can apply as soon as the month after they turn 18. Further information about SSI can be found at www.socialsecurity.gov/pgm/ssi.htm. Most young adults on SSI can also qualify at the state level for Medicaid health coverage.
- SSI financial requirements become much easier once a child turns 18, because at that point the Social Security Administration looks only at the beneficiary’s own income and resources instead of also looking at the parents’ finances.
- Apply for Social Security if Appropriate. People with disabilities can be entitled to Social Security DAC (Dependent Adult Child) payments via the Social Security Administration. This applies if you or your spouse, as the parent of your child with disabilities, receive Social Security benefits, whether retirement insurance benefits (typically just known as normal Social Security) or disability insurance benefits (typically known as SSDI, which stands for Social Security Disability Income). Young adults with disabilities can often receive both SSI and SSDI.
- Discuss Housing Options. Your child of course needs a safe, clean, comfortable place to live. Maybe your child will live with you, or maybe your child would prefer the independence of living on their own or in a group home. As the parent of a young adult with a disability, you may discover that finding a suitable group home can be very difficult. Lack of physical housing, long waiting lists for waivers and affordable housing, and reduced government funding for rental subsidies all make finding a place outside the family home a challenge. Rents can also be relatively high, and many places have limited physical accessibility. Because of this lack of appropriate housing for young adults with disabilities, most wind up living with their parents indefinitely. But at some point, you may predecease your child, and you want to be prepared for that possibility, so get on waiting lists. Work with your local Community Services Board to discuss the options.
- Consider Applying for a Medicaid Waiver Program. Some adults with a developmental disability or intellectual disability may be eligible for a special Medicaid Waiver program that would provide for in-home services and supports in certain housing situations. These waiver slots are usually limited and often have long waiting lists, so apply early with the help of your local Community Services Board.
- Consider Section 8 Housing / Housing Voucher Programs. The Supportive Housing for People with Disabilities Program (Section 811) is a federal program dedicated to developing and subsidizing rental housing for low-income adults with disabilities, such as chronic mental illness. The biggest difference between this program and similar ones is that it provides housing specifically for the disabled and ensures that all housing has access to appropriate supportive services including case management and employment assistance.
- Do or Revisit Your Own Estate Planning: As your child with a disability transitions to adulthood, it is vital that you make an appointment with an attorney who is experienced with Estate Planning, Special Needs Planning, Guardianship and Conservatorship, Special Needs Trusts, and everything else discussed above. The attorneys here at the Farr Law Firm are of course experts in these areas.
- If your adult child will utilize Medicaid, SSI, or certain other governmental subsidies, you should establish a Special Needs Trust (SNT) and/or an ABLE account. These tools can help prevent Medicaid and SSI financial disqualification.
- If your young adult can provide informed consent, consider having them sign an advance medical directive. An advance medical 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.
- Consider the level of support needed. Guardianship and alternatives to guardianship are options. A guardian is a person appointed by a court who is responsible for the personal affairs of an incapacitated person, and for making decisions for that person. An individual under full guardianship loses their civil rights, including the right to vote, enter contracts, marry, and more. It is an option that is certainly needed for some individuals, but you should always consider less intrusive alternatives first so that your young adult can exercise their level of maximum independence. If your disabled child has any significant assets, a conservator will be needed to manage them unless the assets are in trust. The guardian and the conservator, if needed, can be and often are the same person. Remember, however, that many people with disabilities, even significant disabilities are capable of making decisions with help and guidance and therefore may not require guardianship. As mentioned earlier, a Power of Attorney and advance medical directive, sometimes along with a supported decision-making agreement, may be more appropriate. Read more about Guardianship/Conservatorship in my Guardianship & Conservatorship of Children and Disabled Adults FAQs.
Please contact the Farr Law Firm to assist you and your family with preparing for your adult child’s transition into adulthood and associated legal needs. We will always discuss all the options with you so you have a full understanding of the pros and cons of each approach. Contact us whenever you are ready to make an appointment:
Special Needs Planning Attorney Fairfax: 703-691-1888
Disability Planning Attorney Fredericksburg: 540-479-1435
Special Needs Lawyer Rockville: 301-519-8041
Supported Decision-Making Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
