Ages (18-25)

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Guardianship and Alternatives to Guardianship

When you or your young adult turns 18, they are considered an adult in the eyes of the law and have all of the rights and responsibilities granted to adults. Not every young adult is ready and able to make important decisions for themselves. There are several options available for you or your young adult to have the support needed to make decisions about their life, some of which may already be in place such as a joint bank account, or having family and friends to give desired advice.

If you or your young adult child are not capable of making important life decisions, guardianship may be an appropriate course of action. Guardianship is a legal process that allows someone (usually a family member) to ask the court to find that a person age 18 or older is unable to manage his/her affairs effectively because of a disability. A guardian steps in the shoes of the person with a disability and makes decisions in the individual’s best interest.

The Utah Parent Center has developed a brochure to fully explain the guardianship process. You can access it here and here.

It is important for you or your parents to know that guardianship is not the ONLY option that will allow them to actively participate in their adult child’s life. Consider these alternatives to guardianship:   

  • Supported Decision Making –  A way to achieve goals by working with a team of trusted supporters in order to make decisions about the future. It should be directed by the individual as much as possible. It promotes the ability of the self-advocate to be self-determined, control their life decisions, and be more self-sufficient and independent.
  • Power of Attorney –  This is a legal document that is used to allow another person to act on behalf of someone else, including specialized decisions such as healthcare-related or financial choices. “Springing” power of attorney only goes into effect when the individual is no longer able to manage finances or becomes incapacitated. A “durable” power of attorney becomes effective immediately upon signing the document. In most situations, a durable power of attorney is preferred.
  • Advanced Healthcare Directive – This gives another person the ability to make medical decisions for an individual if they cannot make them for themselves or communicate their decisions to others.
  • Money Management Options
    • Social Security Representative Payment Program (Representative Payee) – Provides benefit payment management for beneficiaries who are incapable of managing their Social Security or Supplemental Security Income (SSI) payments. A suitable representative payee is appointed who manages the payments on behalf of the beneficiaries.
    • Protective Payee – A person or an employee of an agency who manages the clients’ cash benefits to provide for their basic needs (housing, utilities, clothing, child care, and food). They may also provide services such as training clients to manage their money.
    • Joint Bank Account – Both the young adult and another selected person are on the same bank account. Both people have access to manage money, bills, and payments and see all account activities. Just like a personal bank account, there is no protection for overdrafts, misused funds, etc.

Resources

Why did you seek an evaluation?

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“We hired an attorney to represent our son when we decided to petition for full guardianship. It gave us peace of mind that someone would represent him in court. The attorney also helped walk us through the process so it went fairly smoothly. Looking back, I wish we had asked for limited guardianship in all 5 areas rather than full guardianship. I didn’t realize the difference at the time and now wish I hadn’t taken away so many of my son’s rights. We do want him to make his own decisions using supported decision-making on many issues.”

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“Existing alternatives [to guardianship] include supportive decision-making. We all need support from people, supportive decision-making is a method that provides a network of people that Autistic and other [developmentally delayed/intellectually disabled] DD/ID people can use to make decisions about their lives. But at the end of the day, the final choice is theirs to make.”

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Person-Centered Planning (PCP)

What do you envision as the best possible future for your or your young adult’s life? Have you decided what that future should look like?  What are your hopes and dreams for yourself or your young adult? And who should make decisions about what the future looks like for you or your young adult? The person who is living it! Person-centered planning is a process to help you determine what your or your young adult’s hopes and dreams are, what the future should look like, and how to make it a reality.

The Life Domain Vision Tool from Charting the LifeCourse is a helpful tool to guide your planning for the future. The tool has question prompts to help you think about what you or your young adult wants in each of six life domains:

  • Daily Life & Employment – including education, how you will spend your time, and individual and family life
  • Community Living – not just living options but also transportation to access your community and neighborhood considerations
  • Social & Spirituality – including personal relationships, leisure and recreation opportunities, and spiritual enrichment
  • Healthy Living – which includes comprehensive healthcare, long-term health needs, wellness, and self-care
  • Safety & Security – considers personal safety and awareness, public safety, and legal and financial safety
  • Advocacy & Engagement – includes self-determination, self-advocacy and leadership, and community involvement

As you go through the document, ask yourself questions such as:

  • How will you spend your time every day?
  • Do you want to access places in your community? How will you do so?
  • Do you want a social life? How will you facilitate that? What about dating and relationships?
  • How will you spend your free time? Are there organizations, causes, or hobbies you want to support or pursue? What about entertainment or travel?
  • Is spiritual enrichment important to you? If so, how will you participate in your faith community?
  • Are you able to direct your own life and pursue your hopes and dreams?
  • Can you advocate for yourself, for your needs? Are you supported by people who can help you advocate for yourself?
  • Do you want to participate in your local community? If so, how would you like to be involved in your community?
  • Do you have healthcare coverage? Are you able to take care of your healthcare need, either by yourself or with support? What are you doing to keep yourself healthy?
  • Do you know how to keep yourself safe from bullying and abuse? And to protect others? To keep yourself, your property, and your finances safe?
  • Do you know how to interact with law enforcement and first responders? Do you have an emergency or disaster plan?
  • Do you have the supports you need to make legal decisions (supported decision-making, guardianship, alternatives to guardianship)?

Two additional areas to think about on the tool are Supports for Families, and Supports and Services. These ask you to consider if and how much you want family support and what supports the family may need, as well as what supports you or your young adult will need to live independently, and who will provide those supports.

This tool also has a column to prioritize what is most important to you or your young adult to begin working on first. For example, if you or your young adult would like to live on their own, that might be a high priority but if you need money to pay for housing, then maybe employment should be the first priority. If there is already a way to pay for housing but you or your young adult needs support to live on their own or with roommates, then maybe engaging supports and services to help when moving out might be most important. Or maybe living independently is not important right now but being able to access the community to do the things you or your adult enjoys is. This tool can be individualized to meet your or your young adult’s needs and can change as life and circumstances change.

The Life Domain Vision Tool can also be used in conjunction with other person-centered planning tools to help parents and young adults develop a robust plan for the future. These tools along with the information found on this website can help with planning and preparing for the best life possible. More information and resources for Person-Centered Planning can be found on the Utah Parent Center website and in the Resources.

Resources

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“Try to get a feel for what they can handle of the adult world, what relationships they've formed, how prepared they are for real life. Make plans for their future, because it's basically here now, even if they (or you) aren't prepared for it.”

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“[Be prepared for] an increase in trying to leave parents out of what they are dealing with and resistance to established supports. They have their areas of interest and will be developing their skills. Giving them more autonomy and choices. Get them involved with how to maintain their own supports and help them see why they are helpful.”

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“Person-Centered Planning means that planning is literally centered around the person and that the person's autonomy and decisions are respected no matter their disability. That communication comes first. Access to communication first matters more than fixing a person's behavior.”

Where to Live?

“Where I am going to live?” is a question you may begin to ask yourself once you’ve completed your high school education. A variety of living arrangements are available to young adults with disabilities. The level of care and type of living arrangement should be based on the needs of the individual. Types of living arrangements can include the following:

Living Independently

When young adults live independently, they live by themselves or with roommates in a house or apartment. In this living arrangement, little or no help is necessary. If help is needed, it is given by family members or adult service providers through visits or telephone contacts.

Living with Family

Many young adults live with their parents while attending school, looking for a job, or working. Living at home may be an appropriate short-term option for young adults with disabilities. Some families, however, may not have the capability to care for their young adult child or relative as they live at home permanently. In this situation, future living arrangements may need to be discussed and planned. Young adults who live with their families should be encouraged to develop or improve independent living skills such as housekeeping, shopping, washing clothes, and budgeting.

Alternatively, some families may choose to have their young adult child or relative with high-support needs live at home throughout adulthood. If additional medical care is needed, nursing services are available for in-home care.

Supported/Assisted Living

Supported living provides services to individuals while they live in a home or an apartment independently. Limited supports are available; however, this type of living promotes community life and independence. This option is most suitable for individuals with minimal support needs.

Supervised Living Arrangements

The purpose of supervised living arrangements, such as supervised apartments, is to offer a structured living situation for individuals who, because of their disability, need some support or supervision. Young adults in supervised living arrangements receive continued assistance and training in independent living skills such as meal planning, use of community resources, and money management. Supervision of the young adult is usually provided by personnel from a local adult service provider or agency. This person is trained in working with young adults who have disabilities.

Residential Care Facility

Residential care facilities include group homes that offer help to young adults who cannot live independently but are capable of spending time in the community with a minimum amount of supervision. Community resources are used for recreation, medical, or social services. The staff works with the young adults to develop independent living skills. Group home staff are employed by a local agency or adult service provider and are trained in working with adults who have disabilities.

Family Life Home/Adult Foster Care

A professional parent or host home is a private household that offers protective social living for individuals who are unable to live independently. The family offers the young adult room and board. Opportunities for participation in social, educational, and recreational activities within the community are also provided by the family life home. The state pays the family to care for the young adult.

Intermediate Care Facility

An intermediate care facility provides 24-hour care for individuals who, through an illness or disability, require ongoing nursing and medical services. These medical services must be provided by a registered or licensed practical nurse or doctor. DSPD has a list of the various provider resources funded by them.

The type of living options available in your community depends greatly on where you live. If you or your young adult needs a state-supported living arrangement following high school, contact the Division of Services for People with Disabilities (DSPD). This contact should be made early because there can be a multi-year waiting list for many community residential service programs. If you need financial assistance with independent housing, information on available supports can be found here. 

“After high school, we had our son start spending weekends in a group home to give us much-needed respite but also to get him used to it in case anything happened to us.”

“Living alone or away from parents will be what some Autistic people need. Supports like section 8, planners, cleaning tools and hacks, and even personal care assistance/aides allow for more autonomy.”

“If you want to live independently, try starting small like living with a couple of roommates in a house or apartment where you are away from your parents but not completely on your own. This will also lift the financial burden of paying for rent by yourself.”

Transportation Options

As you or your young adult child starts to gain independence, transportation may become an important issue to look into. Some young adults with ASD may already be driving or have reliable transportation, while others may be just starting to look into getting their license and a car. However, for many, driving is not an option, so they will need to rely on other forms of transportation. For those who need additional information on available transportation services, below is a list of public, private, and personal options. For more specific information on each transportation option, read here.

  • Public Transportation
    • Bus Systems
    • Rail Systems
    • Paratransit Services
  • For Hire Services
    • Taxis
    • Ride-Share
  • Personal
    • Driving

There are a lot of different things to take into consideration when trying to decide which option is the best for you or your young adult child. You should think about the expenses and accessibility of each option available in your area. Additionally, you’ll want to consider the preferences, likes, and dislikes that you or your young adult child have, along with your overall capabilities. Some individuals with ASD may struggle with sensory overload from large crowded public transportation but do well driving a personal vehicle. Others may not have the capability to drive themselves, but are able to easily navigate and ride the local bus or metro. The option that works best will vary depending on the individual and the area they live in. Some cities or towns are better equipped than others to provide select transportation services to individuals with disabilities. You can speak with your local transit authority to learn more about what options are available in your location.

Individuals in services with DSPD may receive transportation assistance to help with access to waivers and other community services, activities, and resources. The type of transportation will vary but can include providing UTA passes or paratransit services.

Resources

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I drive and have driven since I was 16, but it is not without anxiety. I've learned to recognize what driving situations cause me stress and avoid them. When I take public transit, like the bus or train, I bring earplugs or headphones to tune out the noise. I plan my route ahead of time and have the stops written down in my phone notes, along with the times, so I know exactly where I'm going.

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Public transit does work but it needs more funding to have more frequent and reliable routes. Lyft and Uber are too expensive. Driving is doable for some with patience and a neurodivergent-informed teacher. I drive but I remain aware of my limits. Ideally, I would just rely on public transit, but the amount of planning involved and the reliability is too much for me. Before becoming chronically ill, I walked or rode my bike.

Money Management and Paying Bills

Money management is an important skill for every young adult to learn in order to develop more independence and set themselves up for success. Some individuals with ASD may struggle more with key aspects of money management, such as handling money and budgeting. This may become a bigger problem as they become young adults and are required to take on more financial responsibility, which can include paying bills, buying necessities, saving, etc. Unfortunately, being unable to successfully manage money can affect access to housing, utilities, food, and other key aspects of one’s livelihood.

To help you or your young adult child learn how to manage money, you should first start by opening a bank account if this hasn’t already been done. For individuals who will need accommodations to support the banking process, you can research which financial institution works best for individuals with ASD. Once an account has been made, the next step is to make sure that you or your young adult child can successfully create and stick to a budget. Using visual aids, such as charts or checklists, can help young adults with ASD understand their budget and better manage their expenses. Having visual aids can also make it easier to see any inconsistencies in the budgeted amount vs the amount actually spent.

Resources

As you or your young adult child starts to pay bills, these expenses will need to be incorporated into the budget as well. Make sure essentials such as housing, utilities, and food are covered first before trying to see how much is available to spend on activities, online tv subscriptions, or other optional expenses. Making payments late or not paying a bill can lead to serious consequences, such as being evicted, so it’s important to prioritize paying these bills on time. If you have a tight budget, this can mean making sure to not go over the budgeted amount on other optional expenses. In the event that you or your young adult child suddenly has urgent, unexpected expenses that interfere with paying for necessities, there are supports available that may be able to provide temporary assistance. You can find more information on financial resources available here.

Aside from knowing how much you should pay, you also need to be aware of when your bill is due. This may be overwhelming for some individuals, so creating a system or schedule can be beneficial. To help ease the process, you can set up automatic payments to come out of your account regularly so that you don’t have to worry about missing payments. You can also mark everything down on a calendar so that you can physically check when something is due. Finally, if there are still some challenges present, you can research financial planning applications available to help with budgeting and making payments. There are even disability-focused apps available, such as the Autism Speaks Financial Planning App.

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“Help them do life skills such as shopping and paying bills to help with independence.”

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“Using a budgeting app (such as Mint) that puts my money into visuals or graphics helps me the most. That way I can see how much money I have, how much I have spent, and what I need to spend my money on a lot easier than just reading off totals.”

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“Having a financial lit class that covers relevant material like opening up a checking account, paying taxes, credit cards, and utilizing money management apps is needed. These classes need to consider how neurodivergent people think and the psychology of poverty/ money. For example, I can't follow traditional budgeting. So to pay my bills when I get paid, I pay all the needed things first. When we do need help to manage money, it should be provided.”

Voting

When an individual turns 18 they are able to take on many new responsibilities as a legal adult. One of those responsibilities is voting. This is an exciting time for many young adults because they have the opportunity to make an impact on the systems in place that affect their daily lives. However, without proper information regarding their rights and available accommodations, those with ASD may be discouraged by the overall voting process and associated challenges.

First, it’s important to know whether or not you or your young adult has the right to vote. In the state of Utah, individuals with disabilities, including those with an intellectual disability, are able to participate in the voting process. Even if someone else is the legal guardian, individuals still retain some rights, including the right to vote. This can differ from state to state so you should look up local policies if you are located outside of Utah. 

If you or your young adult have decided to vote, there are several options to consider for how to cast the vote. Utah law allows individuals, with or without a disability, to mail in their vote, send it via email or fax, or go in person to any early voting location or election day poll. For those who struggle with long lines, crowded spaces, sensory overload, or have limited communication,  mailing, faxing, or emailing a vote may be the best option. These voting methods have individual deadline requirements for when a vote should be sent out and received that must be met. More information on the specific deadlines can be found on vote.utah.gov.

Resources 

For individuals who choose to vote in person, there are several accommodations available to help ease the process. Poll workers are required by law to help support individuals with disabilities and can provide assistance with reading the voting forms and figuring out how to use voting machines when requested. If you or your young adult have decided to vote in person but don’t feel comfortable with a poll worker assisting in the process, you can bring a support person instead. This can be a family member or a trusted friend.

Although poll workers are required to provide assistance when needed and cannot ask about a person’s disability, you may still run into a situation where a particular poll worker doesn’t know the laws. If any worker tries to stop you from receiving accommodations or bringing a support person, you can contact your local Protection and Advocacy (P&A) agency. The Utah P&A is the Disability Law Center.

”Fortunately, in UT we have had “vote by mail” in place for 10 years. This makes voting more accessible to those with problems with executive dysfunction, and working memory, especially during years when the ballot takes up two pages. All citizens have a right to vote privately and independently.

Selective Service

Every young adult male is required by law to register with the Military Selective Service when they are 18-25. This includes those who have received an official ASD diagnosis. Since the Selective Service System does not have the authority to immediately determine whether or not a registrant is fit for military duty, there are only a few exceptions to the registration process. According to the United States government, the two exceptions that exist are:

  • A man is placed in a hospital, nursing home, long-term care facility, or mental institution on or before his 18th birthday, had no breaks of institutionalization of 30 days or longer and remained institutionalized until his 26th birthday.
  • He is confined to home, whether his own or someone else’s (including group homes), on or before his 18th birthday and cannot leave the home without medical assistance (for example, by ambulance, or with the help of a nurse or EMT), and remained homebound until his 26th birthday.

In the event that an individual with ASD does not meet these requirements for exemption from registration, but does not have the capability of serving in the military, they, or their family, are able to submit a claim for exemption from service if drafted. This requires that they appear before a board to determine physical and mental eligibility. A detailed medical history and reports will be needed to verify any medical exemptions to service. If Selective Service Officials determine that an individual does not meet the minimum criteria, they would not be drafted. However, if the individual is never called for service and classified as unfit to serve then they would remain registered until they turn 26 and age out of the mandate.

Individuals without an exemption who do not register for Selective Service do not qualify for the Free Application for Student Aid (FAFSA) financial aid to pay for schooling and may face legal consequences. To register for Selective Service, you can go online to https://www.sss.gov/register/, fill out a printable registration form, or complete an SSS form 1 at the post office. For information on Selective Service rules and requirements can be found at https://www.sss.gov/.

Resources:

Social Relationships as Adults

Once public school is completed, there seems to be a drop-off in social interaction for many autistic adults as the natural association with classmates and school activities ends. It may take effort to keep those relationships alive or to find and form new relationships. Even though difficulty with social skills and relationships is a core component of autism, not having relationships and social interaction leads to depression and anxiety in many individuals so it is important to find avenues to build and maintain relationships with others.

Relationships as adults can include acquaintances, online-only friends, casual friends, close friends, and romantic relationships. Acquaintances are people you or your young adult do not know well or may only see occasionally. This can include people in the community, like the cashier at the nearby grocery store, or those you see at the gym or other places. The amount of information shared with and between acquaintances is usually limited to generalities and only brief conversations.

With the prevalence of social media platforms and online gaming, online-only friends are becoming quite common. It is wise to remember that the person known online in one way could be completely different in real life. Be cautious about the types of information shared online and electronically. Not only does it exist “forever” once it is out there, but it’s also important to know who the audience is. Things that are legal to do or say to another adult are not when shared from an adult to a minor or vice versa.

Casual friends are people you or your young adult know by name and see frequently. Often they have shared interests. With casual friends, it is acceptable to have conversations that may include honest, open communication which is reciprocated by both parties. This may not be a relationship where heartfelt desires and emotions are shared, but there is generally a common caring for each other. Casual friendships can also include co-workers. Creating friendships with people at work is a great way to feel connected to the workplace and the job and can give greater interest and enjoyment to the workday.

From you or your young adult’s casual friends will likely be one or two close friends. Most people have a few friends who meet this definition of a close personal friend. These are the people who share interests, thoughts, feelings, and dreams with one another. These friends will stick up for each other, help each other out, and enjoy spending time together. It is important to nurture and work to maintain close friendships as these are the people who will be there for you or your young adult when adversities come and who will share in the happy times as well.

Romantic relationships are part of adulthood but not every adult, with or without autism, wants to find a marriage partner or be in a romantic relationship. If you or your young adult are interested in dating and finding a romantic partner, talk to close friends and family to learn about positive romantic relationships. There are books, blogs, guides, and more that offer advice and tips on dating and relationships that might be helpful. Consider the type of person you enjoy spending time with and are attracted to. The best romantic relationships often start as friendships so work on building closer relationships with others. Many people with autism are successful in romantic committed relationships and are very happy. But it’s ok to not have that desire.

Whether you want to find a romantic partner or not, having friends is an important part of adulthood. That support network can help with depression and loneliness and give meaning and purpose to life. At whatever level you or your young adult are comfortable with, seek out social interaction with others.

Resources

“"This is a time to look for social groups in your church and community. "”

“[Plan for] dating and teaching what is appropriate and what isn’t.”

“[There’s a] bigger gap between progression--other kids leaving home, getting in serious relationships, etc. It’s not happening for our daughter.”

Recreation and Social Life

As teenagers age out of high school and become young adults their social life may start to change. Individuals that choose to pursue higher education will have the opportunity to meet new people and engage in new activities or clubs. Many higher-education institutes offer recreational activities to help students explore their interests and become part of a community. Participating in these types of recreation can be particularly beneficial for young adults with ASD because it can provide an opportunity to practice social skills.

Young adults who aren’t pursuing higher education may struggle more to find activities or opportunities to engage socially with people their age. If you or your young adult don’t have an educational institution to rely on for activities, you’ll have to look within the community to find resources. You can search online for local activities, sports, clubs, or groups. When doing research, don’t be afraid to look into something new. It’s not uncommon for interests to change as people get older, so you can try new activities or take on new hobbies for young adults in your area. Navigating a new social environment can be challenging for young adults with ASD, so it’s important to pick an activity that piques your interest. This is especially important if you or your young adult child have become bored with previous interests. Finding an activity that you’re interested in can help make engaging with others easier and take some of the anxiety or pressure off of social interactions.

For young adults needing additional support, parents can help with finding and participating in activities. Some tips to help your adult child include:

  • Introducing a new activity with small steps
  • Reading your child’s nonverbal cues to understand if they are enjoying the activity
  • Use visual supports to help your child participate

Depending on the individual, you or your young adult child may choose to participate in activities that are organized for people with ASD. Being around other people who can understand an ASD diagnosis can help create a more comfortable and welcoming environment. You or your young adult child might feel like opening up and interacting is easier in this situation. This isn’t the case for everyone though. Many young adults with ASD will simply want to participate in activities that they like or that they can do with their friends, regardless of whether or not it’s organized for individuals with ASD. Knowing these preferences can help when trying to find new activities at school or within the community. If you’re struggling to find options for yourself or your adult child, you can always contact your local disability resource center or independent living center.

Resources

Working with Professionals and Systems

As adolescents continue to age and become young adults they may need to interact more directly with professionals and systems. Many individuals with ASD have the capability to navigate these systems independently as young adults, so practice will be needed to reach higher levels of self-advocacy. For those who have high-support needs and still require assistance from family, it’s important to provide guided learning opportunities to practice self-advocacy skills that match their capability. Regardless of an individual’s level of needed support, developing these self-advocacy skills can create a sense of agency and independence as they navigate and interact more closely with adult systems and professionals.

The Basics About Social Security Disability Benefits and ABLE Accounts

The Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs provide assistance to people with disabilities. The SSDI program pays benefits to you or your young adult if you are “insured.” This means that you or your young adult has recently worked and has worked long enough (based on length of time and income earned) and paid Social Security taxes on the earnings. The Supplemental Security Income (SSI) program pays benefits to adults and children with disabilities who have limited income and resources and whose disability affects the ability to work. Your family might not have qualified when you or your young adult was younger, but at age 18, you or your young adult is considered a separate household and more likely to meet the stringent asset and income requirements for the program. If your child received Social Security benefits as a child, they will need to reapply to receive them as an adult.

While these two programs are different, the medical requirements are the same. If the non-medical requirements are met, monthly benefits are paid if you or your young adult has a medical condition expected to last at least one year or result in death. The diagnosis of Autism alone is not enough to qualify for these benefits. You or your young adult must meet certain requirements such as deficits in communication and social interaction along with repetitive behaviors and extreme limitations in managing themselves. See the “Blue Book” for additional information on qualifying impairments. If you or your young adult has turned 18, you can begin the application process if you have not already done so.

To apply go to:

Understanding SSI – SSI Application Process and Applicants’ Rights

The following resources can help you fill out the application.

Keep in mind that even if you fill out the application online, there may still be an in-person or over-the-phone interview (or both) that must take place in order to ensure you or your young adult qualifies for Social Security Disability Benefits.

And just because you or your young adult receives these benefits does not mean that employment is not an option. There are ways to have a job and keep the benefits. There are benefits planners that can go over the details, options, and programs with you or your young adult. Contact Utah Work Incentive Planning Services for more information. This handout contains information on some Social Security and Medicaid work programs.

If the time comes that you or your young adult can work enough to earn over the threshold set by Social Security, it is possible to lose benefits entirely. Consider this a good thing! You or your young adult is gainfully employed. If circumstances change, reopening your case is always an option.

If you or your young adult is unable to manage the funds appropriately, Social Security will need to designate a Representative Payee. This can be an individual (a parent, guardian, or another interested party) or a professional such as staff at a residential program. There are rules and regulations on how the money is to be handled, what it can be used for, and how it must be reported. Social Security provides a guidebook for individual or organizational payees.

ABLE Account

If you or your young adult does qualify for SSI or SSDI, they are limited as to their assets and income. No more than $2,000 can be in a savings or checking account for any length of time. It is possible to save the excess or unspent money in an ABLE account, named for the Achieving a Better Life Experience Act of 2014. These are tax-advantaged savings accounts for individuals with disabilities and their families. The beneficiary of the account is the account owner, and income earned by the accounts will not be taxed. ABLE savings accounts will not affect eligibility for SSI, Medicaid, and other programs. There are specific limits on how much can be saved and what the funds can be spent on so you will want to make sure you know what those are. More on ABLE accounts can be found at What are ABLE Accounts? and ABLE Utah.

Estate and Financial Planning

Just as earning too much money can affect eligibility for assistance programs, such as Supplemental Security Income (SSI), an inheritance can also jeopardize the public program benefits received by you or your young adult. This needs to be taken into account when planning an estate for an heir with a disability. Only when the inheritance is gone does the public program money, such as SSI benefits, become available again. Through careful estate planning, proceeds from an inheritance can be used to add to the quality of life for the heir with disabilities.

Estate planning should include a team of qualified professionals, necessary legal documents, and funding for a specialized trust, also known as a special needs trust. This is a trust set up specifically for an individual with a disability and if written correctly, the funds in it are not counted as income by eligibility programs such as Medicaid and SSI. It is important that the attorney engaged to create the trust documents is well-versed in special needs trusts as they differ from a regular trust. When properly executed, trust funds can help parents and other loved ones add to the quality of your or your young adult’s life, even after their deaths.

Click here [link to pdf Estate and Future Planning] for additional information on estate and financial planning for the future.

To learn more about how to teach soft skills to your youth, here are some great resources:

“[Remember they] have to reapply for SSI as adults.”

“[Future planning should include] SSI, special needs trusts, ABLE accounts, and who will take care of him when we are dead.”

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Adult Health Care and Health Insurance

At 18 years old or shortly after, your or your young adult child will need to change from pediatric to adult care. If you haven’t already found a new health care provider you can ask for a referral from your previous doctor. Once you find a potential provider, you’ll want to reach out to the office to ask some basic questions, such as:

  • Do you accept my insurance?
  • Is the doctor accepting new patients?
  • How long is the wait for an appointment?
  • Does the doctor have any affiliations with the nearby hospitals?
  • Is there any paperwork that needs to be filled out before the first appointment?
  • Should the pediatrician transfer over medical records or will the doctor request them?
  • Are there any fees for missed appointments?

If the provider meets all of your requirements you can make your first appointment. Before going in to see the doctor, you’ll want to make sure that the office has access to records from previous providers. Once you’re at the appointment, you may be surprised to see that the experience can be quite different from pediatric care. As a young adult, you are now legally responsible for your own care, so it’s important to be able to advocate for yourself and your healthcare needs. In most situations, the doctor is also no longer allowed to share your medical information with your parents, so you’ll have to decide if and with whom to give access to this information. For individuals who already have experience working more directly with providers and advocating for their needs, this transition may be easier to navigate.

If your young adult is unable to independently take responsibility for their healthcare then you may still need to provide assistance. In this situation, there are legal avenues you can take to have access to your young adult child’s medical records and legal rights over their medical decisions. In this case, you can still work on teaching self-advocacy skills to help them gain more autonomy over their health.

There are some wonderful tools that can help you or your young adult child take responsibility for their medication management. Many pharmacy and insurance programs allow for automatic refills, meaning that maintenance medication, or medication taken regularly, will be refilled by the pharmacy as soon as it is eligible for a refill. (Be aware that Medicaid is one insurance that may not allow auto-refilling of prescriptions.) There are pill dispensers to help organize medication by day and even by the time of day they are taken. These can range from plastic pop-open containers up to automated dispensing machines that do not allow the medication to be dispensed until a certain day or time. You can also order medication to come packaged by day and can use medication delivery services to have meds delivered right to your door. Smartphones and smart home technology can be set up to remind you when to take medication. These tools may help you or your young adult child be more independent in caring for their medication needs.

Health Insurance and Medicaid

While navigating this process, some young adults will need to look into health insurance if they don’t have the option of staying on their parents’ policy. Many companies offer health insurance to their employees, which can be a great solution for those who are employed. If you are unemployed, or your workplace doesn’t offer insurance, you will need to find your own. You can purchase insurance directly through the company or you can look on the Health Insurance Marketplace. When shopping for insurance, you may want to compare coverage, copay, and cost for different policies. This is especially important if you’re wanting to access regular mental health services or need to see a specialist for preexisting conditions because these services are typically more expensive and may not be covered by certain insurances.

Additionally, individuals with ASD may be eligible for Medicaid. Medicaid is provided through a state and federal partnership. To be eligible in the State of Utah, you must meet the following criteria:

  • Have residency in Utah
  • Be a U.S. citizen, permanent resident, or a legal alien
  • Need health care/insurance assistance
  • Classified as low income or very low income
  • Be either pregnant, responsible for a child 18 years or younger, blind, have a disability or a family member in your household with a disability or be 65 years or older

The plan builds from a foundation of the family’s strengths and resources. The family should think about what they want the child to learn, what help or support they need, other areas the family needs support, and what resources the family has that can help them to reach desired outcomes. Outcomes should be identified before discussing services and supports. Outcomes can be for your child but can also be for your family. For example, you may want your child to be able to transition between activities without having a meltdown so that your family can enjoy time together doing a variety of activities.

Early Intervention services are to be provided in as natural a setting as possible and parents may be trained by the professionals to work on objectives at home to achieve the desired outcomes.

If you or your young adult child meets the requirements and would like to apply for Medicaid, you can do so by either filling out an application through the Health Insurance Marketplace or through your state Medicaid agency. Access to the Medicaid agency in the state of Utah is available here.

You or your young adult child may also be eligible for coverage under the Affordable Care Act, which provides more affordable health insurance to individuals and families. Eligibility is based on income. To find out more information or to see if you or your young adult child qualifies, visit Health Care Gov.

You can also visit USA Gov to find out more information on health coverage and resources available for individuals with disabilities.

Resources

“The transition to adult medicine comes like a sudden "hard stop" for people who might be better served in pediatrics for a while longer. Turning 18 is this defining moment. In that 24-hour period, you go from being a child to being an adult, and you have to have adult providers.”

“[From a medical doctor] Without a planned transition, a young adult with autism could find himself with a gap in medical care that could lead to unintended consequences. For example, youth may end up in hospital emergency rooms for psychiatric conditions or other problems that could have been treated through primary medical care.”

Transition to Adult Services

Exiting and aging out of the public school system, where disability services are entitled to anyone with a qualifying disability, to adult services where programs are based on eligibility and may have a waiting list, can be a difficult transition. In school, there are a variety of supports and services available to help autistic students who have very few support needs up to those with intense support needs. When school ends, so do many of those supports and services. Depending on your post-high plans, you may be left without easy access to peers, activities, structure, and routines.

Those with low support needs may transition to additional schooling and/or employment. Those with high support needs, especially those receiving support from the Division of Services for People with Disabilities (DSPD), may transition to supported employment, day programs, or both. For many, however, this transition may leave them at home, unsure of what to do next. Hopefully, this isn’t you or your young adult! If it is, go to the Person-Centered Planning section in Home and Community to develop a plan to move forward. Review post-high and institutions of higher learning options and employment supports in the Education and Employment section. You may also consider reviewing content from Ages 14-17 to see what options you may consider as you move forward.

More about the Division of Services for People with Disabilities (DSPD)

DSPD provides a wide range of services intended to help people with disabilities participate more fully in their communities and lead self-determined lives. The type of services available depends on which waiver the person qualifies for. The most common waiver for individuals with autism is the Community Supports Waiver (CSW), a program for individuals with intellectual disabilities or other related conditions to provide services that help people to remain in their own homes or other community settings. Individuals are able to live as independently as possible with supportive services provided through this program. Another option may be the Limited Supports Waiver (LSW) which is similar to the CSW but has individual spending caps and limited service options. As with the CSW, the LSW is designed to help individuals living independently or in their family home.

To be eligible, individuals must:

  • Demonstrate functional impairment in 3 or more of the major areas of life activities. For these purposes, life activities are defined as:
    • Caring for oneself
    • Expressive and receptive language
    • Learning (diagnosed with an Intellectual Disability)
    • Mobility
    • Self-direction (as compared to a non-disabled peer)
    • Capacity for independent living (as compared to a non-disabled peer)
    • Economic self-sufficiency (adults only)
  • Have onset of their disability occur before age 18 for intellectual disabilities or before age 22 for other related conditions
  • Not have a primary condition attributable to a mental illness
  • Meet the level of care criteria for admission to an intermediate care facility for persons with intellectual disabilities (ICF/ID)
  • Meet the financial eligibility requirements for Medicaid
  • Be able to live safely in the community once waiver supports and services are in place

The plan builds from a foundation of the family’s strengths and resources. The family should think about what they want the child to learn, what help or support they need, other areas the family needs support, and what resources the family has that can help them to reach desired outcomes. Outcomes should be identified before discussing services and supports. Outcomes can be for your child but can also be for your family. For example, you may want your child to be able to transition between activities without having a meltdown so that your family can enjoy time together doing a variety of activities.

Early Intervention services are to be provided in as natural a setting as possible and parents may be trained by the professionals to work on objectives at home to achieve the desired outcomes.

Go to their website for more information and a link to the application. If found eligible for services, you or your young adult will be placed on a waiting list. Individuals come off the waiting list in order of most critical need as funds become available. Once in services, you or your young adult could receive supports such as:

  • Behavioral Consultation
  • Personal Budget Assistance
  • Chore Services
  • Residential Supports
  • Companion Services
  • Respite Care
  • Day Supports
  • Supported Employment
  • Medication Monitoring
  • Supported Living
  • Non-medical Transportation
  • Support Coordination
  • Personal Assistance

The Utah Parent Center has resources that can assist families and individuals through this process. Contact the Family to Family Network in your area for help.

Resources

”People often talk about post-high services ending as a “cliff” that individuals fall off of. Instead of being wrapped around with services that are expected, families have to find what services their loved ones are eligible for. Without planning ahead, there can be gaps that may feel like a cliff. Even with planning, things don’t always go as anticipated or at the pace needed. Be patient, persistent, and flexible while you figure things out.

Adult Mental Health Services

At 18 years old, you may need to navigate changing mental health services and supports available for either yourself or your young adult child. Many changes take place during this time, which can include switching from pediatric to adult care. This can greatly impact which services are available and whether you or your young adult child are still eligible for supports previously received. Additionally, the support system that children grow up with at school and at home may no longer be available in the same capacity. This can make finding mental health supports more difficult. Understanding what options you have, how to access those options, and their accessibility to you is the first step in navigating a new system as a young adult.

After graduating high school, many young adults with ASD will continue onto higher education. During this transition, you or your young adult child will need to adjust to a new environment and may attend a school without anyone they previously knew from high school. Most colleges and universities recognize the need for a support system in place to help with this transition and the added challenges that attending higher education can have on an individual’s mental health. In response, high-education institutes will typically offer counseling or other mental health services to students looking for treatment. These supports are usually available at no cost but are generally limited to talk therapy or acute crisis services. Individuals who have more needs may need to look elsewhere to access proper treatment.

Young adults already receiving mental health treatment from a certified mental health care provider, such as a psychiatrist, psychologist, counselor, etc, may need to switch providers once they are an adult. Some providers that specialize in pediatric or child care will continue to see young adults until they are around the age of 21, however; they may need to switch to an adult care provider after. Individuals who haven’t previously received mental health care treatment from a certified professional can look into adult care for treatment and support. If you don’t know how to find a provider you can always talk with your insurance to see who they cover. You can also use websites, such as Psychology Today, to find professionals that meet your criteria. More information on the different types of professionals is available here.

For mental health support during an emergency situation, there are still many of the same crisis intervention programs available to young adults. Some individuals may have been introduced to programs such as Mobile Crisis Outreach Team (MCOT), the SafeUT app, and the National Suicide Prevention Line (800-273-8255) as a teenager. These programs offer great support options that continue to help with critical situations throughout adolescence and into adulthood.

You or your young adult child may also begin to take more responsibility for your own mental health by participating in self-care activities and learning to control your mood and emotions. There are a variety of resources available to help you do so, including this Self-Care Activity Matrix or this Crisis Plan to prepare for and prevent potential meltdowns.

Resources

”[Watch for] emotional and mental health issues, their concept of self and other abstract ideas that may have formed with experience and training.

Diagnosis as an Adult

Autism can sometimes be missed in early childhood or adolescence, leaving a young adult without a diagnosis. This can happen for several reasons, such as being misdiagnosed with a mood, behavioral, or mental health disorder, or having a co-occurring condition that overshadows challenges and signs of autism. A diagnosis can also be missed in the adolescent years if the person has low support needs and has developed coping mechanisms to compensate for their disability, such as masking or camouflaging. This is especially true for women. For more information on the differences in Autism between men and women continue to read this PDF.

It’s not uncommon that a young adult only considers seeking a diagnosis after their child or another family member has received an ASD diagnosis. There is also a small group of young adults that stumble upon autism through independent research or a medical evaluation for other disorders. Regardless of how an individual comes to wonder about Autism, they may ask whether receiving a diagnosis later in life is necessary. This will be entirely up to the individual. Some people may use books, the internet, and information organizations to do their own research, rather than having an evaluation. They may also choose to self-identify as autistic without a diagnosis. For others, there may be a strong desire to seek professional evaluation. In this case, it can be beneficial to understand the next steps and what to expect.

Many young adults looking for a diagnosis choose to pursue neuropsychological testing with a psychologist or psychiatrist. This testing can determine whether or not an individual has ASD or a condition that has similar characteristics like Obsessive-Compulsive Disorder (OCD) or Attention-Deficit Hyperactivity Disorder (ADHD). Finding a facility that will provide testing for adults may be more difficult, as many specialists focus on young children and adolescents. You can speak with your family doctor for recommendations and referrals if you’re having trouble finding where to get an evaluation.

Since there aren’t any tests developed specifically for diagnosing adults, the evaluation process itself will be heavily focused on observation, and behavior history, and may include online or written assessments. These tools will be used to evaluate cognitive, linguistic, and communication abilities, in addition to sensory issues, restrictive interests, and repetitive behaviors. Undergoing this type of evaluation can paint a clearer picture of an individual’s challenges and what that means as it relates to the DSM-5 diagnostic criteria. The testing can take several hours and may not be covered by insurance. You can check with different facilities and talk with your insurance provider to get an idea of associated costs and coverage.

If a young adult receives a formal diagnosis they may be able to apply for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI), depending on their situation. They can also use a formal diagnosis to request accommodations for employment under the Americans with Disabilities Act (ADA). Individuals who don’t need these additional supports may still find value from an ASD diagnosis. Simply receiving a diagnosis can help explain challenges and differences. It may also help young adults increase self-awareness, and gain access to more information and tools to better understand and navigate society. You can watch more about SSI in The Basics About Social Security Disability Benefits and ABLE Accounts, and employment accommodations in 14-17 Considering Employment. 

“As an autistic woman who was diagnosed at a young age, I don't think there's as big a difference in Autism between males and females. I think the bias in healthcare is still a big problem and may delay diagnosis in girls or a girl's diagnosis may not be taken seriously. But, growing up with two Autistic brothers, I never noticed a gender-based difference. Autistic people are very unique, regardless of gender.”

“People diagnosed as an adult are just as valid as those diagnosed as children. They aren't less Autistic. How they are Autistic is just different. Disparities lead to people going undiagnosed, especially in women and people of color. Not having a diagnosis leads to a lot of misunderstanding and frustration as to why a person struggles and finds life exhausting. Autistic people are more likely to suffer from unemployment and homelessness and have a harder time with addiction. Not having a diagnosis, especially an official diagnosis means you can't get the help and support you need.”

Adult Criminal Justice System

Once an individual turns 18, they and their families may need to pay close attention to the system changes that take place and how this might affect their lives. This is especially important for the criminal justice system. When an individual on the spectrum is still a minor, the juvenile system is often more forgiving and may offer more supports. The adult system often lacks knowledge on how to adequately recognize, understand, and support individuals on the spectrum. Additionally, law enforcement may see and respond to youth on the spectrum differently than young adults. This creates a situation where young adults with ASD are more likely to have run-ins with law enforcement.

Unfortunately, unusual behaviors that may have seemed harmless as a child, may now seem threatening as an adult. This can draw more attention and can cause trouble with law enforcement. Young adults with ASD are also more likely to get into legal trouble without realizing that they’ve done something wrong. Some examples include making inappropriate sexual advances, downloading child pornography, making threatening outbursts, or having meltdowns that are physical and aggressive. Receiving or providing more education on what is and what is not acceptable is the best way to try and prevent something like this from happening.

If you or your young adult end up interacting with law enforcement for any reason, it’s important to know when and how to disclose an ASD diagnosis. You can read more information on tools to help smooth interactions with law enforcement and how to disclose an ASD diagnosis here.  Disclosing to law enforcement can be beneficial because young adults with ASD may not respond to law enforcement in the same way that a neurotypical person would, which might cause a misunderstanding without the greater context of an ASD diagnosis. Some examples of ways a young adult with ASD might respond include, resisting law enforcement intervention, responding inappropriately or not at all, or having a meltdown, which can cause them to end up in police custody.

If you or your young adult child gets arrested or needs to be questioned, make sure that a lawyer who fully understands an ASD diagnosis is present to help with the situation. This is true for all individuals on the spectrum. Some young adults with ASD may initially seem neurotypical, so their communication deficits may go unseen or misunderstood by law enforcement, creating a more complicated situation. Body language and communication style that is normal for an individual with ASD may come across as rude to law enforcement. They may also misunderstand lack of eye contact or poor communication, and equate that to the individual having something to hide. While overwhelmed or confused, young adults with ASD may also be more likely to produce a misleading statement or confess to something they didn’t do, thinking that it’ll please law enforcement or help end the questioning.

Having a lawyer present can provide a lot of support during any questioning; however, it won’t necessarily make the situation disappear. If you or your young adult child break the law, the case may need to go to court. In this circumstance, it’s critical to disclose an ASD diagnosis so that the defense attorney, judge, and possible jury can be more understanding of any inappropriate behavior or atypical communication during the trial. Things like body language and tone of voice while speaking can be critical when determining the results of a trial, which is something that many individuals with ASD struggle with.

There are several scenarios that can follow suit if a young adult pleads or is found guilty of a crime. The individual may be sentenced to community service, probation, jail time, treatment in a facility, or fined. Young adults with ASD are more susceptible to victimization in jail or prison. There are also limited rehabilitation services available with this option, so other options should be chosen, if possible and warranted by the crime. Unfortunately, many ASD individuals end up incarcerated for minor infractions. You can always continue to work on prevention and educate yourself or your young adult to help mitigate problems before they become serious legal issues.

”Autistic adults who are undiagnosed are especially at risk of being victims of the criminal justice system.

Filing Taxes

Once an individual turns 18, they may need to take on the responsibility of filing and paying their own taxes. If you or your young adult child make more than $12,400 in a year or are no longer a student, filing taxes independently is a must. Once these requirements are met, income tax has to be paid and parents are unable to claim their adult child as a dependent. The only IRS exceptions to this policy are for those who have high support needs and cannot engage in any “substantial gainful activity because of a physical or mental condition” or for families who have guardianship over an adult child. Filing taxes independently for the first time can be difficult to navigate; however, those with ASD may encounter additional challenges with the process.

As a person with a disability, you or your young adult child may qualify for certain tax deductions, income exclusions, and credits. For those interested, the IRS has provided a detailed list with more information. You or your young adult child may also have more complex sources of income or benefits, which can include Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), or Disabled Adult Child Benefits (DAC). Certain income and benefits are taxable, while others are not. Because of this, doing taxes may be trickier than the average young adult filing for the first time. For more information about which services are taxable, you can read here.

If you feel concerned about you or your young adult child filing taxes, there are several services available that can provide support. The Volunteer Income Tax Assistance (VITA) offers free help with taxes for individuals who make less than $57,000 per year, have a disability, and those with limited English. With this support, IRS-certified volunteers explain tax credits and prepare a basic tax return with electronic filing. You can also look into paying a company or accountant to help with taxes. Depending on the complexity of the taxes being filed, pricing for these services varies.

Individuals that make less than $12,400 but are not claimed as a dependent on their parents’ taxes may still choose to file; however, they will not owe any income tax. If this is the case for you or your young adult child there are a couple of options available for handling income taxes. The first option for those who work in a company that provides a W-4 is to mark ‘exempt’ on the form so that income taxes are not taken out of each paycheck. In this case, you are not required to file an income tax return, although you can still do so if you’d like. The second option available is to have taxes taken out of each paycheck and instead receive a tax refund after filing.

To find out more about you or your young adult child’s specific situations and to determine if and how taxes should be filed, you can talk with a tax advisor to figure out the best options. You can also find a lot of great resources on the IRS website.

Resources

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“Taxes are confusing and stressful. There are options for free tax filing, usually with university accounting programs. This means no paying for tax services, less stress, and it gives an accounting student some practice.”

“

“Services like Casa that have accountants volunteer their time to file my taxes have helped me a lot.”

Education and Employment

There are many different scenarios that can apply to students with ASD as they approach the end of their high school experience.

Completing High School

Many students with ASD do fine in school and are able to graduate with their peers with a regular high school diploma. Those with IEPs, however, have some options to consider. As part of the Transition IEP team meeting, you or your student may choose a regular or another type of high school diploma and whether or not to end their public education at high school or continue to a post-high program.

The types of high school diplomas include:

  • Regular High School Diploma
  • Alternative High School Diploma
  • Alternate High School Diploma

More about these and other education options can be found here. 

If you or your young adult exits the school system after high school, at age 22, or any time in between, the school should provide a Summary of Performance. This Summary should include recommendations on how to assist you or your young adult in meeting their postsecondary goals. It should contain key information that can assist in understanding what accommodations can be helpful in a postsecondary setting and provide useful information should you or your young adult choose to disclose their disability at some point.

Post-High Programs

All school districts in Utah offer post-high services which support young adults ages 18-22 to learn skills that will help them transition to independent adults in their community. These programs may meet in a separate building from the district high school if student numbers support it. Charter schools must offer post-high programs if the IEP team determines it is appropriate for the student.

To qualify for a post-high program, students must have an IEP, be at least 18 but no older than 22, not have a diploma or didn’t graduate with their peers, and want to participate in transition services. Check with the district or charter school about the specific program options available to you or your young adult.

Each student’s program is individualized and is based on personal needs, preferences, interests, goals, and outcomes. Some skills taught in post-high programs include employment, accessing public transportation, community awareness, and safety, living independently, communication, relationships, academics as they apply to daily life, healthy lifestyles, recreation and leisure, technology, and more as outlined by the student’s IEP. Employment skills often include on-the-job training at one or more worksites with school staff available to act as job coaches. Transportation to and from community sites is practiced while going to job sites, to various activities, and other naturally occurring ways. The desired outcome of the post-high program is to create a seamless transition for the student from school to adult life.

Higher Education and Lifelong Learning

Many individuals with ASD will choose to continue pursuing education after graduating from high school. People with lower support needs have several options, which can include attending a 4-year University, College, Trade or Vocational School, Online School, or a Certificate Program. Individuals with high support needs may also want to continue their educational journey but might need to enroll in specialized programs to receive the appropriate accommodations.

There are several disability-specific programs available in the state of Utah so that individuals with a disability, such as ASD, can continue learning. Regardless of you or your young adult child’s abilities, it’s important to continue to seek out and provide opportunities for lifelong learning. These can take place through educational institutes or community organizations. More information on educational programs available for young adults can be found here.

“

“See if [your] kid needs some time off - especially if they had a full workload in high school. Socially, are they ready to take on a job or go to college? What resources might they need? [Look at the] skills your child has that could be turned into a job. At least by 11th grade, apply for Voc rehab, and help them figure out transportation, bus, driver's license, etc.. Look into colleges, class sizes, cost, boarding, etc.”

“

“My son wants to be an aerospace engineer but doesn't want to do homework, attend college classes, keep a regular schedule, or anything else. He failed 3 semesters of college and hit a point where he wasn't going anywhere. We met as a team (my son, parents, grandpa, uncle, peer support specialist, employment specialist, and therapist) to help him understand we are all here to help. He has his driver's license, been employed full-time at the same job for years, and is taking less credits but passing college classes. I'm so proud of him and the progress he has made!”

“

“Find out where the accessibility office on your school's campus is and get to know it. The advisors and staff there can help get you the accommodations you need to succeed in your classes (such as note-taking help, extra time on tests, later deadlines). They will also provide documentation for your instructors so you don't have to explain the accommodations or reasons behind them yourself. Also, find and use the counseling resources your campus offers. This is very helpful for maintaining good mental health and managing anxiety.”

Employment Services

Vocational Rehabilitation and Pre-Employment Transition Services

Many young adults desire to be employed or start working on the process. Some are able to do it on their own but others may need additional help and support to find a job. The Utah State Office of Rehabilitation (USOR), also known as Vocational Rehabilitation or Voc Rehab (VR), assists individuals with disabilities to obtain meaningful employment, integrate into the community, and improve accessibility and independence in their lives. They do this through different programs and partnerships which include:

  • Employment Services
  • Utah Work Incentive Planning Services (UWIPS)
  • Utah Center for Assistive Technology (UCAT)
  • Student Transition Services

Employment Services

To be eligible for employment services, you or your young adult child must be old enough to work and have a significant physical or mental impairment that results in a substantial barrier to employment. You or your young adult child must require vocational rehabilitation services to obtain or maintain employment, such as support to get a job or to stay on the job. There must also be a benefit to you or your young adult child by being employed.

To see if you or your young adult child is able to access Voc Rehab services, find the VR office nearest you by calling 1-866-454-8397. Then attend a welcome session and obtain an application. This can be done in person at a VR office or viewed online. Applications can be obtained from you or your young adult child’s school, from the local VR office, or downloaded here.

After viewing the welcome session and completing the application, you may schedule a meeting with a VR counselor. At this meeting, you or your young adult child will need to bring certain records and information. The VR office will tell you what to bring. You or your young adult child can bring someone to the appointment. The VR counselor will discuss and assess your disability and paths for employment. You may be asked to sign a Release of Information form so the counselor can obtain additional information to determine eligibility for services.

The counselor has up to 60 days from the day of the appointment to determine eligibility for services. If it is determined you or your young adult child are not eligible for services, a file review can be requested by calling the local VR office.

If determined to be eligible, the VR counselor will contact you or your young adult child to help develop an Individualized Plan for Employment (IPE). This plan outlines the steps to take toward obtaining employment with choices to help fulfill the goals you or your young adult child set.  This includes choosing the type of employment that best fits you or your young adult child’s skills, interests, and abilities, and determining the needed services to reach the employment goal. The VR counselor will connect you or your young adult child with the person or agency that offers the services needed.

Utah Work Incentive Planning Services (UWIPS)

Utah Work Incentives Planning Services (UWIPS) helps people who are currently receiving Social Security disability benefits (SSI/SSDI) and would like information on how work may affect their Social Security and other benefits such as Medicaid, Medicare, food stamps, housing, etc. UWIPS also educates people about work incentives and community resources that might be helpful.

Vocational Rehabilitation (VR) clients can ask their VR Counselor to refer them to UWIPS. Other agencies such as the Division of Services for People with Disabilities (DSPD) can also refer individuals to UWIPS. You or your young adult child may also refer yourself by filling out a Referral Form and faxing it to 801-974-1992 or calling 801-887-9530. You do not need to be a Voc Rehab client to access UWIPS.

Utah Center for Assistive Technology (UCAT)

The Utah Center for Assistive Technology (UCAT) is a statewide resource offering information and technical services to help people with disabilities acquire and use assistive technology devices. UCAT offers free evaluations to anyone within the state of Utah. UCAT’s services are available to people with disabilities, parents and other family caregivers, rehabilitation counselors, independent living specialists, special educators, occupational therapists, physical therapists, medical professionals, and others who are concerned with and advocate for people with disabilities.

If assistive technology could help you or your young adult child access employment or complete skills needed to do their job, VR can refer to UCAT. It is also possible to self-refer by filling out a referral form and emailing it to ucat@utah.gov. You do not need to be a Voc Rehab client to access UCAT.

UCAT Assistive Technology Specialists can help by:

  • Designing, building, and fabricating custom devices
  • Modifying devices to better meet a need
  • Helping clients to learn to use aids to daily living (ADL) to extend their range of independent activity
  • Assessing job and home sites to determine the best way to facilitate access
  • Identifying and referring equipment and resources.
  • Loaning devices for trials of up to 30-days to ensure that they are suited to the need

Student Transition Services

Vocational Rehabilitation provides Transition Services to eligible students with disabilities as they transition from high school to adulthood and employment, providing students ages 14-24 with a holistic team approach, and individualized activities and services that are necessary and reasonable to help prepare for, obtain, and maintain employment. A full list of services offered can be found on their website.

VR partners with the school, family, and IEP team, as well as other adult service agencies, to ensure that transition-aged youth with disabilities have the supports needed to successfully transition from high school to adulthood, independence, and employment. They provide designated VR Student Transition Counselors to every public high school and charter school, to act as a liaison and direct contact for VR services. See Resources for links to find the Counselor assigned to your or your young adult child’s school.

Pre-Employment Transition Services (Pre-ETS)

Pre-Employment Transition Services, also called Pre-ETS, are offered to any student with a

disability and aid students in exploring and planning for successful future employment. It differs from the full array of Student Transition Services as it focuses on targeted training in:

  • Career exploration
  • Workplace readiness
  • Counseling on postsecondary education
  • Self-advocacy
  • Work-based learning

To be considered eligible for Pre-ETS, you or your young adult child must be aged 14-21, and be a student in a secondary or post-secondary program receiving services on an IEP or section 504 plan. A more complete description of Pre-ETS can be found on their website and in this handout.

Resources

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“Our daughter wanted a job (motivated by money) and worked on Landscaping at Lagoon, and then as a school janitor. She makes fairly good money and can work on her own and still contribute.”

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“[Prepare for] a lot of uncertainty. They need to find what type of job would work well with them. Find a lot of options. Have them do some volunteer work before trying to find a job so they can see how well they do. [It’s] a major lifestyle transition as they change from being a student to employment. Voc Rehab can be helpful during this transition.”

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“My son could have gone to college decided not to. He loves animals and with help from a friend he was given an interview at Petco and hired. He later left them for more money and worked at Walmart but after a year was not happy. So he interviewed at another Petco and has happily been working there. As a mom, I had to realize that my extremely gifted son may never go to college and always work at Petco but he’s happy and kind and it’s ok.”

Employment Benefits

Individuals with a disability must receive access to the same benefits offered to every employee within a company. Employers cannot exclude an individual from benefits because of a disability. There are laws and agencies in place, such as the Americans with Disabilities Act (ADA) and the Equal Employment Opportunity Commission (EEOC), that ensure individuals with disabilities have the same rights and opportunities to work as every other individual.

Currently, there are no federal laws or Utah laws that require employers to provide benefits such as paid or unpaid sick leave and vacation. If you need to take sick leave due to a disability but your company doesn’t offer benefits, you can request unpaid time off as an accommodation. The ADA requires that employers make exceptions to their policies in order to provide reasonable accommodations. Employers aren’t required to approve the request; however, they do have to take it into consideration. A company can deny a request if it causes undue hardship. If you are approved for time off as an accommodation, jobs are allowed to require doctors notes or documentation to verify that you were sick or needed medical attention.

Similarly to sick leave and vacation, many employers are not required to provide health insurance to their employees, regardless of full-time or part-time status. Under the Affordable Care Act (ACA), companies are only required to provide health insurance if there are 50 or more full-time employees. If an employer meets this criteria they are required to provide 95% of their full-time employees with insurance. Part-time employees would not qualify for these benefits unless the company decided to extend the offer to all employees. If your company does not provide health insurance or you do not qualify for it because of your part-time status, you can shop for health insurance through your state’s Marketplace. You can also see if you qualify for Medicaid. More information on health insurance is available in 18-25 Working with Professionals and Systems. If you’re unsure of whether or not you are considered a full-time employee, you can talk with your company to determine your status and what that means in terms of the benefits available. The Fair Labor Standards Act (FLSA) does not define full-time or part-time employment, so what qualifies as each will be determined by each employer.

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