We live in a society where work and career are considered central to a person’s identity, personal fulfillment, and contributions to their community. Yet many people with intellectual and developmental disabilities (I/DD) are assumed to be incapable of working. What are they deprived of when we assume they can’t work? What is the world missing without their contributions?
Fortunately, today more employment services and job opportunities are available for students and adults with I/DD than ever. But many parents are unaware that these job supports exist.
Starting as early as high school, employment services can help an individual explore possible careers, take stock of their interests and aptitudes, try out different work experiences, find meaningful paid employment, and receive job coaching to learn and succeed at their job. And the experts we spoke with told us that any individual who wants to work, regardless of the type or severity of their disability, can receive supports and find meaningful employment.
To learn more about this topic, we spoke with Scott Shepard, executive director of Avenues Supported Living Services, a nonprofit that provides supported living services including employment; Sofia Cervantes, advocate with the State Council on Developmental Disabilities; Nicole Morris, in-house transition specialist at Undivided; and Amy Shaw, an employer who partners with supported employment service agencies to provide paid internships and jobs to adults with I/DD.
In general terms, supported employment is when a person with disabilities receives the individualized, ongoing support they need to find and keep paid work. It encompasses a wide range of services from career exploration to on-the-job support to career advancement skills.
Supported employment services aim to help people with disabilities achieve competitive integrated employment (CIE). CIE means they have a right to employment, whether full- or part-time, where they earn at least minimum wage; have the same pay, benefits, and advancement opportunities as people without disabilities doing similar jobs; and work in integrated settings where people with and without disabilities work side by side. Things weren’t always this way, but today CIE is the standard and should be attainable for all people with disabilities who seek it.
Employment First is a national initiative that encourages states to adopt regulations, policies, and systems that support competitive integrated employment for people with disabilities. California became an Employment First state in 2013 when it passed AB 1041, which states that “opportunities for integrated, competitive employment shall be given the highest priority for working age individuals with developmental disabilities, regardless of the severity of their disabilities.”
As parents, we know that people often make assumptions about what our children can and can’t do based solely on their appearance, how they communicate, or their perceived intelligence or physical capabilities. The Employment First framework says that we should never assume that a person with a disability can’t or doesn’t want to work just because they have a disability. In fact, employment should be the default option for how an adult with disabilities will spend their days, just as it is for people without disabilities.
Cervantes, who has worked with people with developmental disabilities and their families in various capacities for more than 20 years, puts it this way: “Regardless of their disability, regardless of our perception, families’ perceptions, professionals’ perception of what that person’s ability is or limitation is, employment should be the first option to explore based on that person’s preference.”
Starting in high school, as your student prepares to transition to adulthood, they have access to a variety of pre-employment services, primarily through the California Department of Rehabilitation (DOR). DOR pays for these services for students aged 16–21. (The Regional Center pays for employment-related services only for adults age 22 and older, with few exceptions.)
DOR is a state agency that provides vocational services to people with disabilities, including high school students and adults, with the goal of helping them achieve employment and independence. DOR’s Student Services provides support for students to explore career paths or postsecondary school as part of their Individual Transition Plan (ITP), which lays out the plan for their transition to adulthood. DOR’s Student Services are available to all students with a 504 plan, an IEP, or a documented disability. Since many schools have an existing relationship with a DOR representative, it’s best to first ask the school to put you in touch. If your school does not have a relationship with the DOR, you can apply for DOR services by filling out a form online or in person at your local office.
DOR provides five pre-employment transition services for students with disabilities ages 16–21:
DOR also provides coordination services for students enrolled in its programs. This means DOR will coordinate with your student’s school, attend IEP meetings if invited, attend your student’s Regional Center planning meetings if invited, and coordinate with employers and other resources in the community to help your student access employment, internships, and other work-related opportunities.
You can invite someone from DOR to attend your student’s IEP or ITP meeting, but they can attend only if your student is already enrolled with DOR, so contact DOR well in advance of your first ITP meeting.
Your student may also be able to access pre-employment transition services through their school if their school has a Transition Partnership Program (TPP). A TPP is a collaboration between DOR and a Local Educational Agency (LEA) (e.g., a school district) where pre-employment services are provided by school staff rather than DOR. Like DOR’s Student Services, a TPP provides individualized support to students ages 16–21 to help them successfully transition to meaningful employment or postsecondary education.
The main difference between DOR Student Services and a TPP is that a TPP provides services based at the school by a dedicated school team who coordinates with DOR. The services may also be more intensive and integrated with the student’s school life. Not all schools have a TPP. Contact your school’s transition teacher to find out whether your school does.
In addition to DOR Student Services and TPPs, WorkAbility is another set of state-funded programs designed to help students with disabilities prepare for and obtain meaningful employment.
WorkAbility I is a program for high school students with an IEP and gives them the opportunity to obtain job skills while in school. The program helps students learn skills to find and keep a job. Students learn through occupational training and on-the-job experience in competitive integrated employment settings. High school students may be able to access WorkAbility I services as early as age 14. Talk to your child’s IEP team to find out what opportunities are available through your school.
In adulthood, individuals access employment services through DOR and the Regional Center. These services are available only to Regional Center clients. Supported employment must be part of the person’s Individual Program Plan (IPP) to access these services.
WorkAbility II is a collaboration between DOR and adult schools and Regional Occupational Programs/Centers. There are not many of these programs in the state of California.
WorkAbility III is a collaboration between DOR and California community colleges. The program is designed to assist California community college students who are also DOR consumers and are seeking employment.
WorkAbility IV is a collaboration between DOR and select California universities, including UC and CSU campuses. The program assists students of these schools who are also DOR consumers and are seeking employment.
The Regional Center considers DOR the primary “generic resource” for employment services, which means the Regional Center will refer you to DOR first for these services.
DOR provides a wide range of employment services, including but not limited to disability assessments, career guidance and counseling, job search training, job placement, post-employment follow-up, services specific to deaf/hard of hearing and blind clients, vehicle modification, and supported employment. These services are called vocational rehabilitation (often shortened to Voc Rehab) and begin at age 18. The adult may opt to continue DOR Student Services while they are still eligible for IDEA in an adult transition program for 18-22 year olds.
DOR’s supported employment services provide ongoing support to help individuals maintain employment in an integrated setting. The primary support provided is job coaching.
DOR does not provide these services directly. Instead, DOR connects the client to an employment services agency that will provide the direct services, which are paid for by DOR. In California, agencies that provide supported employment services must be vendored with DOR and the Regional Center. They are also required to have CARF certification, which is an internationally recognized certification that demonstrates their qualifications to provide employment services and adherence to international standards.
The supported employment agency hired by DOR will provide the initial support to help the individual find a job that is a good match for their interests and strengths. Once the individual has a job, the agency will provide a job coach.
A job coach is with the individual while they work. They help the client learn how to do the job and provide them ongoing guidance and support. The goal of a job coach is to help individuals learn their job well so that they can perform it successfully and with increasing independence over time.
“The ideal is the job coach is learning the job alongside the client and sort of helping where they can initially,” says Morris, a transition specialist and former job coach. “Then they kind of fade themselves out” as the individual becomes more independent in their work
The job coach is also a bridge between the individual and the employer. “The job coach is there to be a support ‘in case,’ and not just for the client, but for the employer too, because a lot of times, employers don’t necessarily know how to work with someone that has a disability that would require a job coach.” The job coach supports the employer by being a liaison between them and the employee and by supplementing the training and supervision the employer provides.
A job coach may be with the client up to 100 percent of the time when they first start their job. But the job coach’s services will be reduced as the individual becomes more self-sufficient. The ultimate goal is for the individual to require a job coach no more than 20 percent of their working hours. Morris says that getting to that point usually takes about six months, although DOR will provide supported employment for up to 24 months, as needed. After this time, responsibility may fall to the Regional Center.
And if a job coach is needed more than 20 percent of the time? “Then the job is the wrong job for them, and it’s time to look at other options,” Morris says. If they are not able to do the job with 20 percent support or less, the agency will help the person find another job where they can successfully reach that goal.
Supported employment is designed for people who will be able to perform traditional jobs in the community with at least this level of independence. The supported employment model, says Morris, “does presume a level of ability to maintain yourself at a certain level in the community, independent of support.”
There are alternative employment support options for clients with more significant disabilities who would not be able to perform a traditional job with this level of independence. See below under “Customized employment.”
Once the individual has become more self-sufficient at their job through supported employment and requires job coaching no more than 20 percent of the time, the Regional Center takes over paying for the ongoing job coaching.
Morris says that, ideally, the transition should be a matter of “back-end paperwork” that doesn’t affect the client or their job. The agency paying for the services shifts from DOR to the Regional Center, but the services don’t change. The client may receive a letter from DOR stating that DOR is discontinuing services, but this does not mean the client has lost their job or job coaching, but rather that the DOR is handing it off to the Regional Center to pay for the ongoing services.
Although job coaching is designed to be scaled back and maintained at no more than 20 percent, the service is flexible. For example, a person might get a job, do well at the job, gradually scale down their job coaching support, but then at some point begin to struggle. Sometimes this happens because the person is given new duties or gets a promotion, and sometimes it’s because they struggle with transitioning to having less support. The Regional Center will grant temporary increases in job coaching to help the person deal with these kinds of circumstances.
Is there an advantage to having SDP with supported employment?
Morris says there are no major advantages to participating in the Self-Determination Program (SDP) when it comes to this particular service. The only potential advantage is that with SDP the job coach doesn’t have to be from an employment agency but could be a person of the individual’s choosing, such as a friend or relative.
The Regional Center also offers paid internships through PIP, which is their paid internship program, which is meant “to increase the vocational skills of individuals served by the regional center and create a pathway to a competitive integrated job.” Regional Center pays a set amount of wages to the individual so the employer doesn’t have to. Here’s how it usually works, as Morris explains:
Morris says, “The whole point of it is to be like, ‘Hey, we want you to take a chance on this person. I know you might be a little bit leery because they have a disability and you’re unsure or uncomfortable. We will pay their salary for this amount of time. If it works out for you, we would really like for you to hire them.’”
Ideally, an internship ends with a job offer. This expectation is set up with the intern and the employer at the get-go. It doesn’t always work out that way, but that is the goal on both sides. If an internship doesn’t translate to a paid position, the individual can do another. Individuals are limited to one paid internship at a time.
Morris tells parents that some employers are also happy to take advantage of a paid internship but don’t plan to hire. Good employment agencies try to avoid this by working only with employers they trust, being clear upfront about expectations, and not returning to employers who don’t follow through.
Where can you start? Contact your Regional Center service coordinator and ask specifically about the Paid Internship Program (PIP).
The Regional Center partners with organizations such as Project SEARCH, which offer unique vocational training programs. Project SEARCH is a one-year transition to work program for young adults with I/DD. Its model centers on “workplace immersion,” beginning with a series of 10- to 12-week internships at host businesses where participants learn marketable, transferable hard and soft skills. As they progress through the program, participants are supported to implement job search strategies with the goal of landing Competitive Integrated Employment. They also establish connections with appropriate support services agencies and receive long-term follow up support from Project SEARCH to ensure they can maintain their jobs and continue to progress in their careers.
If your student is interested in a vocational program such as Project SEARCH, you can ask your Regional Center about participating in it or a similar program.
In addition to employment, DOR offers a paid internship program and what’s called “work experience.” Most internships are one year, but there is a dollar amount cap on internship funding. The employer does not pay for the internships; DOR or the Regional Center pays for them, which incentivizes employers who might be hesitant to participate in the program.
Morris tells us, “Adult work experience is really the exact same program as student work experience, except they're an adult, they're no longer in school, but they have no experience at all, and they maybe don't know what they want to do with themselves. So an adult work experience is really good because there is no expectation for hiring, none at all. You're going to this employer saying, ‘Hey, I have this person that wants to learn how to do what you do. Here's these things they're qualified to do. We will pay their salary. Can they come and learn your trade? And the person gets 100 hours to learn that job. And maybe the employer is like, ‘I really like this guy. I want to hire him. But there is no expectation.”
DOR’s work experience program is designed for adults who have no prior employment experience and no idea what kind of work they want to do. The difference between it and the internship program is that there is no expectation of hiring at the end, and the time commitment is shorter. Work experience provides 100 hours on a given job. If the individual likes it, they can request an internship. If not, they can do 100 hours of work experience at another job to continue gaining skills.
There are new updates and changes, so be sure to read our Undivided updates: SDP budgets, IDEA grants, and DOR paid internships. For example:
This is one of the biggest worries for parents.
For DOR internships/work experience
For internships, Morris tells us it’s best to wait out the internship, then get a new internship, as you can have as many internships as you want - they are indefinite. For DOR work experience internships, Morris recommends finishing out the 100 hours, if possible. “It's only 100 hours, barring safety concerns. There's always reasons why you might end it early but you should always stick out the 100 hours, if anything, because it shows you're building stamina towards becoming employed.”
For PIP
Morris explains that while Regional Center’s PIP lasts a lot longer, but still carries the same concept. “If at the end of the PIP, the employer doesn't like the client, and the client doesn't like the employer, then you part. That's kind of the advantage of internships, right? You're trying each other out for employment,” Morris says.
For paid jobs through DOR
With jobs, Morris tells us that if the job doesn't work out for your young adult, or they want something different, you have to go through the whole process all over again. She explains: “Let’s say you're a Regional Center client, and you've gone through the DOR and you have this job and you've had it for a year — DOR is no longer in the picture. And for whatever reason, you lose the job or you quit the job, then you have to start all over with the DOR process. But if you lose the job while you're at DOR, nothing changes. They just reauthorize finding you a job again.”
Morris’ answer is simple: “All.”
Supported employment services are individualized, so there is no predetermined list of possible jobs. No jobs are off limits. The process of determining a good job match is person-centered, meaning it is based entirely on the person’s goals, preferences, and needs.
Finding the right job is an individualized, person-centered process. It begins with the person and what they want.
Morris points out, “That doesn’t mean if someone walks in and says, ‘I want to be an astronaut,’ and they clearly don’t have the skills to do that,” that they will be employed as an astronaut. The individual and the agency they are working with will discuss the individual’s strengths and interests, and those will be the basis for finding a job. “Just like anyone else,” says Morris.
An assessment may or may not be done, depending on the agency. More often, says Morris, it’s just a matter of looking at the person’s interests, experiences, and skills and finding a job that matches.
The supported employment model helps people obtain traditional jobs, with some support. But for individuals who have more significant needs, there are other paths to employment. This is utilized for those with unique challenges that make traditional employment not feasible and all attempts at gaining employment have been unsuccessful. Usually, there is a 6-to-8-week “discovery” process in which a portfolio of the person is created.
If your young adult hasn’t been successful in a traditional or supported employment setting but still wants to work, customized employment may be an option — and it’s recognized by both Regional Center and the Department of Rehabilitation (DOR). Customized employment is a way to carve out a job that an individual with more significant disabilities can perform well and will meet an employer’s unmet need. According to the Department of Labor, it is “a process for achieving competitive integrated employment (CIE) or self-employment through an employee and employer relationship that is personalized to meet the needs of both.”
“Customized employment says, ‘Hey, this person has support needs that exceed traditional employment, but they deserve a right to become employed and to have these successes,’” Morris says. “So what can we do to help them customize employment?”
Customized employment - explaining the process
Usually what happens is the discovery specialist gets in contact with the family and starts a dialogue. They meet with the person in their place of comfort, wherever that might be: their home, their favorite location in the community, etc. They get to know the person, not the paperwork. They interview the people in that client's life. They may go see them doing their favorite activities or interview important people in their life. It's about getting to know the person by seeing their daily life and what the people around them think of them. The Discovery Specialist may want to see them perform certain tasks or enjoying their interests. From there, vocational themes are discovered, and then the specialist helps craft employment for the individual by finding an employer whose needs match the skills of the client. This typically creates natural supports and eliminates the need for job coaching.
Customized employment can be done completely through DOR or in conjunction with Regional Center and DOR. In this scenario, the Regional Center Counselor authorizes a community partner to do the “discovery” portion of customized employment, and they get with DOR to fund the actual employment portion.
In supported employment, a program known as Community Rehab Program (CRP) provides support. A CRP is a local vendor or company providing support and job coaching. Initially, it is paid for by the Department of Rehabilitation, and then after a certain time, it will transfer to the Regional Center for continued funding, but the client won't notice a difference.
On-the-job support for a client can go on indefinitely up to 20-25% support. If the client is in need of more support than that, it will not be indefinite, but the limit is determined on a case-by-case basis. If a client needs 1:1 support at all times, they will not qualify for supported employment.
Customized employment, if done correctly, ensures that the person finds a job where the support is natural and therefore they don’t need a 1:1 job coach or aide to be successful. The goal is to tailor the environment to the individual so that they don’t need a lot of other support.
Customized employment, which is available through DOR, is a more intensive and lengthy process than supported employment. It has four stages:
Discovery
Planning
Business negotiation and job site analysis
On-site training and supports
During the discovery phase, a trained customized employment specialist spends time with the individual and their family to get to know them in depth and discover the kind of work that would best suit them. Morris says this phase can take six to eight weeks.
Shepard uses customized employment with his clients, including some who are nonspeaking, have schizophrenia or other mental illnesses, or have other disabilities or behaviors that make traditional employment a poor fit. He speaks with the client and their family members, former teachers, and other significant people in their life. Questions may include things like:
Do you enjoy being outdoors or indoors?
Do you like being around a lot of people or not too many people?
Do you prefer a noisy environment or a quiet environment?
Do you want to move around on the job, or do you want to be stationary?
Do you prefer or excel at fine motor movements, like on a keyboard?
Do you like pushing, pulling, carrying? Do you like more gross motor kinds of things?
The assessment will seek to understand things such as the person’s physical stamina, behaviors, and means of communicating, as well as their interests and passions.
Typically during the discovery phase, Morris says, “some vocational themes present themselves,” or in other words, “some skills that could become jobs, some interests that could become jobs” start to become apparent.
All the individual's support staff and family have a meeting to decide which way to go with employment. Then, the specialist can help find a place in the community to work. The DOR is unlikely to accept someone into the customized employment model who could be supported by the supported employment model. Essentially, the DOR will try the supported employment system before they will pay for the more in-depth evaluation. Regional Center may fund the discovery piece of customized employment; however, DOR is responsible for finding the place of employment.
What can customized employment look like?
The hours, the duties, and the expectations of a job may all be customized. This is called “job carving.” Sometimes it entails carving out specific tasks that are normally only one small part of a job, and that becomes the entire job for the individual. It could also mean carving out a lighter schedule. For example, Shepard has clients who work only a few hours per week because that’s all the stamina they have.
Morris gives the example of a young man with autism whose passion was Skee-Ball. He had taught himself everything about the machines. So the customized employment specialist found a local arcade that hired him to service their Skee Ball machines. As a bonus, they also allowed him to play as much as he wanted when he was there. It was not a lot of hours, but it was something he could succeed at and enjoy doing and that served the employer’s needs.
Customized employment requires a lot of time up front to find the right job fit for the person. “But the cool thing about the customized employment is, if the environment is correct, if the environment is one that they’ve spent a good time cultivating,” then often the person “doesn’t require the job coach at all.” The holistic approach of customized employment means the company is invested and the individual has found the right fit.
Despite the intensive front-end work of customized employment, “even then, the first job might not work out,” says Shepard. “But we find out what worked and what didn’t work, and then we move on to the next.”
Shepard says that gaining work experience may be an important part of the process, especially if the individual has had less life experience and fewer opportunities to learn about themselves in a variety of environments and activities.
“We find it takes, usually, an average of three jobs for people to figure out what they want to do. And that’s okay, because we learn more from each job — even a job loss, we think, is a good experience, because we find out again what worked and what didn’t work.”
Amy Shaw, vice president of supply chain for Cuccio, a beauty brand that provides luxury spa products, finds so many benefits to supported employment that she’s brought the program to the last three companies she’s worked at.
Shaw says her company has both supported employment and paid internships. Most of the jobs are in the warehouse, but they’ve also had employees and interns work in the office, providing data entry or administrative support. There’s no limit to the kind of job they can have; it’s based only on the skills and interests of the worker.
She loves the program because she knows she’s going to get employees and interns who are vetted by the agency, dedicated to their job, and enthusiastic about their work. She also loves having the support of the job coach, who she knows she can go to if any issues or questions pop up.
Employers who have never tried it might imagine that having a supported employment worker would be extra work for them, but Shaw finds the opposite to be true.
“I find it’s easier to hire the supported employment population because I know what I’m getting. They’ve worked already with the provider. You know, they’re kind of vetted prior to coming in for an interview here.” Instead of posting a job and not knowing what kind of candidates she’s going to get, with this program, “these qualified candidates come to my door.”
The employees she gets are prepared and supported. “The training that they get before they step [in] here is really great. They’re all set up to know what to expect. They go through a lot of training,” she says. “The support starts way before they get to my door as an employer, and then the whole time they’re here, they continue to be supported.”
Employers might also worry about challenging behaviors or that workers won’t perform well. If that occurs, “it’s handled like any employee that would have any type of similar issue,” says Shaw. “But in their case, they have the coach, which is great because it puts a lot of the onus on them to handle the situation.”
The biggest benefit of being part of the program is simply this: “They’re great employees.”
She also finds that having supported employees changes the workplace in positive ways. “There’s a sense of pride that everybody feels when we bring these programs on. I’ve noticed that other employees now take a little bit more pride in their work, and they really want to set a good example, which is something I never thought would happen.”
Shaw, who also serves on the Santa Clarita Valley Mayor’s Committee for Employment of Individuals with Disabilities, says that not enough employers take advantage of the program. The biggest barrier is lack of awareness.
“They’re uninformed. They don’t know these programs exist. They don’t know that you are completely supported,” says Shaw. “They think it’s going to be hard. They think it’s going to be scary. A lot of people don’t know how to interact [with people with disabilities]. They just don’t know. So I think it’s just a matter of educating people and getting the awareness out there to just try it. Just give it a try.”
Not only employers, but many parents don’t know these programs exist. In fact, one of Shaw’s employees, a parent of a son with disabilities, learned about supported employment at work, when a supported employee became her coworker. Her son was an adult and wasn’t working. She got her son into the supported employment program. “He’s now working. You know, so just bringing the awareness to everybody is important,” Shaw says.
There’s a simple answer. “The parent is not involved,” says Morris. “That’s something that I think parents need to understand. Your child is an adult. The adult world doesn’t give you an option. An employer is not going to sit there and listen to a parent and let the parent determine the job. That’s not happening.”
Morris says the family has no role with the employer or at the workplace. “An employer is not going to allow a family member to be involved.” And, she says parents “have to be careful. That person is still an adult in a job in the adult world, and they need — the family needs — to respect that. The family needs to recognize that they don’t dictate anything to an employer.”
Parents might want to help where they can — for example, with the job application or job search. Morris says they can do this to a degree, but she’s quick to remind parents, “that’s the employment agency’s job. That’s what they’re being paid for. So the employment agency is being paid for not only doing job development — job development includes job training, interview skills, advocating with employers for the person with a disability, helping the person become employed, advocating for their rights if their rights are being violated, all of those things.”
Morris says that the agency typically will work with the family as a whole, including the parents, knowing that this is often important and beneficial to the relationship between all parties. However, parents will not be allowed to dictate terms or communicate directly with the agency apart from their child. One exception is if the client is under a conservatorship, in which case the parent is permitted to communicate directly with the employment services agency.
As to what kind of support a person might need, in general the primary support provided to anyone in the supported employment program is a job coach. If additional accommodations are needed, then the employment agency can advocate for those accommodations. These may include providing assistive devices, allowing more frequent breaks, and making other disability accommodations.
As noted, DOR’s supported employment services are usually limited to 24 months. Often, it takes less time than that for a person to find a job and gradually reduce their reliance on a job coach to 20 percent or less.
With the Regional Center, there is no limit to how long a person may receive supported employment services. Morris explains, “The Department of Rehabilitation provides the service to get the person employed and maintain that employment temporarily, and then Regional Center provides the support indefinitely after that.”
There are no limits in terms of who can use employment services, other than that they must be Regional Center clients. “If people want to work, we can find something for them,” says Shepard.
Shepard says often clients with a history of behavioral issues require a more creative approach. In some cases, behaviors may compromise a person’s ability to maintain a job or continue employment services. But if the individual is motivated to work and the agency is willing to continue trying, it can usually be worked out.
Shepard tells the story of a young man who was fired from a job because he “cussed out his job coach.” After he was fired from a second job for similar reasons, the supported employment agency stopped working with the young man, saying that he wasn’t ready to work because he wasn’t willing to take direction from a job coach.
Shepard’s agency began working with this young man, and they heard from his perspective what the issue was. In his view, his job coach wasn’t his boss and so shouldn’t be allowed to tell him what to do. He also didn’t like being followed around by a job coach when none of his fellow workers were. “He doesn’t want somebody hanging around because it makes him feel different from the other employees. It stigmatizes him.”
Shepard’s agency reached a compromise with the young man. They knew that he needed some job coaching, but they agreed to provide it before and after his work shifts, and not during. The job coach would also be available during work hours if the boss wanted to speak with them. They told him, “If your boss wants us to come in, we’re going to have that relationship, but your primary relationship is with your boss.” The young man agreed to try it.
It worked. Before his shift, “We help him sort of get ready for work,” which for him involves “getting the right attitude,” says Shepard. The job coach gives him a ride to work, “but then, boom, he’s on his own.”
“We’re doing a lot of that stuff behind the scenes. And when he has an issue with coworkers, he’ll call [his coach] and we’ll sort of hash it out after work, but he’s there independently.”
Shepard gives another example of a client who worked at a grocery store, shelving items and making sure their labels were front-facing. Sometimes at work, “he’d get a little hyper and he’d start doing some stimming,” Shepard recalls. “He was a big guy, and so people would be scared.”
Even though he wasn’t aggressive, people around him felt physically intimidated by the behavior. His coach made sure he had access to a private room during such moments where he could go and take a break by himself. When he had calmed down, he returned to work.
“One of the things that he learned is that when he was taking a break, he wasn’t getting paid,” Shepard says with a smile. “So after about a month or two, he said, ‘Okay, I don’t need a break. I’m okay.’” And he was able to reduce the stimming behavior on his own.
Job training can be seen as a support for future employment. But remember that it’s only employment if you’re paid.
Many programs offer work-based learning or job training. These range from paid or unpaid internships to job shadowing to training programs where a person learns and practices marketable skills. These can all be important stepping stones but not a final destination. Remember that the ultimate goal for each person, regardless of the type or severity of their disability, is competitive integrated employment.
If your adult child ends up spinning their wheels in a program that is not leading to competitive integrated employment, it might be time to change service providers. Shepard’s examples illustrate that sometimes it’s necessary to try a different approach.
The Olmstead decision was the result of a Supreme Court case in which two women with disabilities sued an institution that kept them in confinement long after they were supposed to be released to a community-based program. The court found that “unjustified segregation of persons with disabilities constitutes discrimination” in violation of the Americans with Disabilities Act.
The Olmstead decision has had widespread implications and impacts. In the area of employment, it means that individuals should be employed in settings that are as integrated as possible, as appropriate to their individual needs. The court found that placing people in segregated environments because of their disabilities “perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life” and “severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”
Historically, and until very recently, many people with disabilities have worked in “sheltered workshops,” where they were segregated with other workers with disabilities and often paid well below minimum wage. With Olmstead and a new law that requires people with disabilities to be paid at least minimum wage as of January 2025, these practices are rapidly being phased out.
There are many misperceptions and widespread misunderstanding about how employment affects a person’s public benefits. In fact, Morris says, “The biggest barrier to employment for people with intellectual and developmental disabilities specifically is a lack of understanding of their services and their benefits. You have anything from them believing that they’ll lose their medical benefit altogether, to them not understanding that that dollar amount on Social Security going down isn’t a bad thing” if it means their total income, from benefits and employment, is going up.
Supplemental Security Income (SSI)
Supplemental Security Income (SSI) is a need-based cash benefit for children and adults with disabilities who have very low household income. Many adults with disabilities rely on SSI as their primary or sole source of income. To qualify for SSI, adults must have a disability that is expected to last for at least 12 months or to shorten their lifespan. They also must be deemed unable to engage in “substantial gainful activity” (SGA) due to their physical or intellectual disability. This doesn’t mean they can’t or won’t work, but rather that they are not expected to be able to earn more than a certain level of income (the level is established by the Social Security Administration).
How employment income impacts SSI income
Some people think that having SSI means that they aren’t allowed to work, but that is a misperception. People also think, incorrectly, that if they have a job, their SSI will be taken away or reduced and that their total income will be less than if they didn’t work. But the combination of SSI and employment income will always be more than SSI alone. This is true no matter how little or how much you work.
SSI recipients are not penalized for working. In fact, the Social Security Administration offers several work incentives for SSI recipients. These incentives are designed to allow you to keep more of your SSI benefits while employed, deduct certain out-of-pocket expenses that you need on your job because of your disability, keep your Medi-Cal insurance even after your SSI benefits stop due to employment, and more.
Because individuals don’t understand this, often they think they shouldn’t work at all — or if they work, they aren’t making use of work incentives. In other cases, their family doesn’t want them to work because their family relies on their benefits and is afraid of losing them.
Morris says everyone should know this: DOR provides free benefits counseling to clients to help them understand their benefits and maximize work incentives.
“It’s an underutilized service that is vital, because the biggest thing about employment is our clients don’t understand their Social Security very well, but the Department of Rehab offers that counseling for free.”
Morris says when a person signs up for DOR services, they should ask to talk with a benefits counselor. “What that person does is then look at their Social Security benefit and help them plan how best to maximize their work money and how to get the most out of what the State offers.”
How to save money through an ABLE account
In addition to having little income, one of the conditions that makes a person eligible for SSI is that they have few resources. For an adult individual, the cap is $2,000, and for a couple it’s $3,000 (some things are excluded from that total, such as a home you own, one vehicle per household, and your household belongings). Practically speaking, this means that a person on SSI is limited in how much money they can save in a bank account, which limits their ability to save for their future or a big purchase.
But there is a way around this. ABLE accounts allow individuals on public benefits to save and invest money without losing their benefits. ABLE stands for “Achieving a Better Life Experience.” An SSI recipient can open an ABLE account and save money far above the usual SSI limits. In California, an SSI recipient can save up to $100,000 in an ABLE account without their SSI benefits being affected. Funds in an ABLE account can be used for a variety of qualified expenses, including education, transportation, and housing.
ABLE accounts can give people with SSI more financial security and freedom. With an ABLE account they can put money away for future goals or big-ticket purchases, such as taking a vacation or buying a car. The accountholder and their parents, relatives, friends, or a trust can contribute to the account.
Cervantes notes that ABLE accounts are available in most (though not all) states, and it’s possible to open an ABLE account in a state other than your home state, instead of or in addition to opening one in your home state. The terms of ABLE accounts (fees, account limits, etc.) vary state by state, so you’ll want to research these to determine what the best option is for your child. It’s also important to know that some states offer tax benefits only to their own residents, and that Medicaid “payback” rules at the time of a beneficiary’s passing can differ by state, which may impact your decision about where to open the account.
The takeaway from everyone we spoke with — employment service providers, employers, and advocates — is that students and adults with I/DD have a right to paid work and real contributions to make in the workplace.
The kind of work, the number of hours, and even the reason for working will not be the same for everyone. For some people, it’s about having a career. For others, it’s about making extra money, contributing to their community, or making friends at work. For everyone, it’s about what Shepard calls “meaningful days.”
He says, “People need to have meaningful days. And regardless of the severity of someone’s disability, we firmly believe that everyone can do things that are meaningful,” including work.
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