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No More Confusion About Transition to Adult Services

By Beth Jordan — Read full transcript

Beth Jordan from Helen Keller National Center's Kansas office shares her insights on "Preparing for Transition". Beth talks about the mandate for educational services versus the lack of a mandate for adult services. She provides a roadmap through the array of residential and employment service possibilities that exist and the need for early planning.

Chapters: 1 — Introduction; 2 — Moving from Appropriate Education to Adult Services; 3 — Adult Services Related to Employment; 4 — Employment Outcomes and Environments; 5 — Residential Options; 6 — Funding for Residential Options; 7 — Apply for Adult Services Before Adulthood.

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Now Playing: Chapter 1

Webcast Transcript:

CHAPTER 1: Introduction Beth Jordan shares her insights on Preparing for Transition.

JORDAN: I really see that there are a couple of keys to success, and for the family, a lot of times they can feel like the burden is all on them to help their child go from high school to life beyond high school. And so what I encourage them to do is establish a person-centered futures plan on behalf of their child. It's student-focused. It looks at their strengths, their capabilities, their interests, and it doesn't just put all of the burden on the family.

It shares that load with other service providers, with people who know the family, friends, people in the community, people who know supports. And that process helps to establish a dream for that student, and then they work through action steps to make that dream come to life. There are several tools that are a part of that person-centered futures planning process. One of them is called Essential Lifestyle Plans, one of them is called Personal Futures Planning, and then McGill Action Planning System is a third tool.

NARRATOR: We see the cover of a personal futures planning workbook titled Life Building: Opening Windows to Change by Dr. Beth Mount.

JORDAN: But those are really great processes to help move from the school to life beyond the school.

CHAPTER 2: Moving from Appropriate Education to Adult Services

JORDAN: When a child is in school, they're entitled to that free appropriate public education, but then when they make that transition to adult services, it's very different. It's all based on eligibility. You have to complete the application and then be determined eligible or not. And that brings us to the second point, which is funding.

When in school, if the individualized education plan team, the IEP team, determines that a student needs a service or a piece of equipment, it's provided. But at the adult service level, just because you're eligible for services doesn't mean that the funding is there. Often there's a waiting list, and sometimes those waits can be many years. And so that's a big distinction that often parents are surprised to find.

The third one, which is really important, has to do with that individual student, and it's a matter of individual responsibility and self-advocacy. Let's say you're talking about a young man who's in high school and he has vision and hearing loss.

Webpage example for the Disability Services Office at Boston College.

He may need large print materials to see in the classroom and he may have an interpreter, but when that young man is ready to go to the community college, for example, that plan, those supports that are in place, will not be known by the college, and so it's up to that student to advocate for himself and say, "This is what I need."

If a person is going to be pursuing post-secondary education at a college or a university, often on every campus there is an office for students with disabilities.

NARRATOR: We see as an example the webpage for the Disability Services Office at Boston College. Next, we see the cover of a Handbook for Students with Disabilities, produced by Gettysburg College.

JORDAN:That's an important person to visit, that office is, because that's where you'll know what services they'll provide and be able to share, what services you need to be successful, and then from there, working with your professors on campus so that they know your individual needs and you can get the support that you need in a classroom.

CHAPTER 3: Adult Services Related to Employment

JORDAN: For a person who wants to get a job, one of the best supports that's out there is vocational rehabilitation services. And in some states, there's one agency that provides services to all people with disabilities.

In other states, it's a separate system where there's an agency for people who have blindness and vision impairment, and then there's the agency that serves everybody else. And there are a number of key points to help people understand the VR process, because it's very different from what they've been used to in the school system. For starters, the key goal of the vocational rehabilitation process is employment, it's getting a job.

A young woman with Charge holds a plastic bottle.

No one can be denied an application. Even under an order of selection or a time where funding is limited, people with the most severe disabilities receive first priority. So for our population, our kids who have both vision loss and the hearing loss, that's often a good thing. They'll be receiving services over someone who maybe has just vision loss or just a hearing impairment. So it's good.

NARRATOR: In a video clip, a young woman with CHARGE stands by an industrial sink and fills a plastic bottle with cleaning solution. Later, we see her out in the cafeteria of a hospital cleaning the tables.

JORDAN: Services are time-limited. A lot of times, people think once you are on with the vocational rehab, you're set for life, but that's not the way it works. Once you have a job and you've been working for 90 days successfully, that case is closed, and that's a good thing. That's a success.

Employment doesn't have to be full-time; it can be part-time. I know a lot of people are concerned about whether they'll maintain their other benefits if they go to work full-time, but you can work part-time and still be considered successful through vocational rehabilitation.

CHAPTER 4: Employment Outcomes and Environments

JORDAN: If you're looking at employment, there's really a broad spectrum of employment outcomes that are available, and I just want to talk a little bit about each one of those, and we're going to start from the most restrictive and end up in the least restrictive. And so the first one is a day program, and a day program is kind of like an adult day care setting.

There's a lot of supervision, the activities are primarily social, recreational,and the staff are paid usually through county or state funding. The employment piece that's connected with that, sometimes there's volunteer work, but a lot of times it's just social activities, things to keep them busy. The second one on that spectrum is a sheltered workshop, and a sheltered workshop, like a day program, is a separate, segregated setting, and the people who work there all have disabilities, outside of the staff.

Those workshops receive contracts from the federal government, for example, private businesses, to create a product, to produce a product,and the employees help to achieve those contracts. And the distinction is that they're often not paid a competitive wage, so it's not a minimum wage job; they're paid a piece rate for each amount of work that they complete during a period of time. The third one in that spectrum of employment options is an enclave.

NARRATOR: In a video clip, we see two students with CHARGE working at their supervised jobs. They are responsible for emptying trash and recycling bins.

JORDAN: And an enclave is where a couple of people, four to six people with a disability, work under the supervision of one or two people, but out in the community. And so an example might be if a work crew worked in a hotel and cleaned a bank of rooms. Those individuals may not be independent enough to clean the room on their own, but together, with supervision, they can get that job done.

Two young adults stand side-by-side, fililng containers with trail mix and candy.

NARRATOR: In another video clip, we see two young adults with CHARGE who are side-by-side at a workstation in the back of a market. Their job is to fill plastic containers with trail mix and candy.

JORDAN: The fourth one is supported employment, and supported employment means that the person goes out into the community, gets a job just like you and me, but needs ongoing supports to do it successfully. Maybe during the first couple of weeks they need someone with them all the time to make sure they're learning the steps appropriately. And then after that, that job coach will check back in with the employee, with the employer, and make sure that things are going well, see if communication is good, you know, help ensure the success of that placement. And the wage should be a competitive wage with what the other people who work in that setting are earning.

The fifth one on that list is competitive employment,and these are jobs that anyone can get. You get them in the newspaper, you knock on doors, you fill out applications online. So a competitive employment job, the distinction between that and supported employmentis that the person doesn't need supports to do that job; they can do it independently on their own.

NARRATOR: Two young adults with CHARGE work in the back room of a large market where they place containers they have just filled on a scale and weigh them. They then place a price label on each one. The containers are put into a shopping cart for delivery to the shore's shelves.

JORDAN: So the last one on the spectrum is really self-employment, and for people who want to work in this area, there's a number of different choices. For example, I know deafblind people who havetheir own business doing repair of Braille writers, or they create unique notecards that they sell. Another woman that I know has her own tote bag business. She hand-designs them and she sells them.

A number of people sell stories, short stories, poems to magazines and newspapers, and they're able to do that from their own home. They use their computer as their communication tool, they do it on their own time, transportation's not an issue, and so there's a lot of flexibility options around working as a self-employed person. I think the key really is for self-employment is not only making sure it's something you enjoy doing, but it's a product that the public wants to purchase, and that'll help ensure the sales of the company.

I wanted to just make one other point as it relates to vocational rehab and this spectrum. So if you are seeking services through vocational rehab, they can really help with the last half of that spectrum, from supported employment, competitive employment and self-employment. If your son or daughter is looking to go to work at a sheltered workshop, you won't need VR for that. It's not an employment outcome that they would support, and so really just those three at that one end.

CHAPTER 5: Residential Options

JORDAN: So when a person is thinking that they're going to move out of their family home and move into the community, some people can do it and live independently, but others need some support to do that. And so the trick for the families is figuring out how to pay for those supports. And there's a wide range of options for residential placements, just as there is for employment.

And so again, we'll start with the most restrictive and kind of talk through them through the least restrictive. So the first one is a care facility much like a nursing home or intermediate care facility where the focus is on medical needs, supervision is 24 hours a day, a lot of medical staff are available, usually a larger facility, and it's very segregated. But if that's the need, that's what's available.

A blind young woman and young man sitting at the kitchen table with a sighted woman.

The second one on the list could be the family home, where they hire supports to come into the family home to provide those services to the person. The third one on the list would be a group home, and that's a house in a community where paid staff usually work all of the hours that folks live there.

NARRATOR: In a photo, we see a young woman and a young man who are blind, sitting at the kitchen table in an apartment. With them is a sighted woman who is going over the household bills and a calendar.

JORDAN: The numbers vary in a group home. I've seen group homes as small as four to six, and I've seen group homes that had eight to ten people in them. And then the next one on the list would be living in an apartment or a house with one or two people, with paid support staff.

And then, finally, the last one on that spectrum for residential options is to live independently, whether it's in a dorm room, in an apartment, in a house,and usually those folks may not need support or they may have a friend who helps them out, so it's not a paid situation.

CHAPTER 6: Funding for Residential Options

JORDAN: The funding to pay for these supports—that's the hot topic that a lot of families really try and figure out. And there's one key service that's out there that people tend to go to, and it's called the Medicaid waiver. It's also referred to as the Home and Community-Based Services waiver, or HCBS waiver. And a person is determined eligible for that if they're eligible for Medicaid, and that's the process. And in each state, it looks a little different as to what the agency is that's the entry point. In the state where I live, there are three main agencies that you can contact to apply for services. One is called a community developmental disabilities organization, and it looks different all over the state, and the second one are centers for independent living.

A blind young woman smiles while she carries a colander full of red peppers.

NARRATOR: In a photograph, we see a young woman who is blind in the kitchen of an apartment. She smiles as she carries a colander full of red peppers that she has just washed.

JORDAN: And the third one is the Department of Aging, for people who are older adults. So in each state, as I said, it's a little different, so you have to figure out in your own state what is that agency, and then make inroads to make an application. The services that can be provided through these residential supports are as varied as anything.

It's really surprising, the wide variety of services that can be provided. They can provide case management, they can purchase durable medical equipmentand technology, they can pay for the staff at these facilities, they can pay for therapies... the range is endless. And so often with the Medicaid waiver, the beauty is the flexibility of this. The parents can hire who they want to provide the services, and then the money comes from the Medicaid waiver to pay for those services.

CHAPTER 7: Apply for Adult Services Before Adulthood

JORDAN: Sometimes whenever I meet with a family and their student is 20, about to exit the school system, I ask,"What's the plan for life after high school?" And if they tell me that they're looking at residential options but they haven't applied for services yet, it's a time to get a little nervous because usually at that point.

There's a long waiting list to receive those kinds of supports, and many times the young person will have to stay at home for a few more years until their name comes to the top of that list for those supports. And so I really want to encourage families to apply early for those supports for residential services. You know, apply at five if you can, because you don't want to get to the end of the road and then realize you have all this time you have to wait.

A young blind man stands at the stove.

It's essential that you talk to other families and find out what they've done, learn from them, learn from their mistakes, find out what worked for them, explore what options are available, visit those places, see what they look like. You'll know, you'll have an instinct that will just tell you, "This is right for us, for my family." So apply early.

NARRATOR: A young man who is blind is shown loading the dishwasher in his apartment. In another photo, one of his roommates, who is also blind, stands at the stove and sautÚs some cuts of beef in a pan.

JORDAN: You know, the resources are varied, there's not a central point of contact at the adult service spectrum as there is within the educational system. You can certainly seek out your vocational rehabilitation counselor, you can find out who is the Medicaid waiver provider in your state, and I encourage people who have a person that they're working with who has both a vision loss and a hearing loss to contact their Helen Keller National Center regional representative. We're based in ten offices across the country, and we can really serve as a life-long point of contact for you and your family, and then the agencies who provide services to that person, to help find resources and supports.