School Days to Pay Days An Employment Planning Guide for Families of Young Adults with Intellectual Disabilities

©2010

Linda Freeman

Melanie Jordan

Margaret Van Gelder

Editorial Assistance

Emily Rubin

Lead Contributors

Bruce Brewer

Michelle Harris

Elena Varney

Thanks to the following individuals who contributed important information and assisted in reviewing versions of this publication at different stages:

Stelios Gragoudas

Victor Hernandez

Sandy Hobbs

David Hoff

Nancy Hurley

Susan Nadworny

Maria Paiewonsky

Cindy Thomas

Karen Zimbrich
And a very special thanks to the following individuals who shared their visions and stories with us which helped make all of this information real:
John Anton

Matthew Arlington

Nicole Bibeau

Debbie Bibeau

Marissa Donati

Barbara Donati

Michael Duggan

Marie Duggan

Sherry Elander

Brian Farmer

Lindsay Foley

Robin Foley

Rick Hawes

Amy Cathryn Recupero

Emily Murgo Nisenbaum

Andrew Sinclair

Julie Sinclair
This publication is a product of Work Without Limits, funded by the Centers for Medicare and Medicaid Services (CDFA No. 93.768).
The Department of Developmental Services was formerly the Department of Mental Retardation.

Contents
INTRODUCTION 5
GETTING STARTED 8

The Individualized Education Program (IEP)

Transition Planning Form

Chapter 688 Referrals

Career Preparation While in School

Employment-Related Activities Outside of School

College: A New Possibility

How Does the Department of Developmental Services (DDS) Support Young Adults

with Employment Planning?

What if My Young Adult is No Longer in School?

What are Employment Service Providers?

Employment Models to Consider
OTHER EMPLOYMENT CONSIDERATIONS 23

Can My Young Adult Get Support from Both DDS and the Massachusetts Rehabilitation Commission?

One-Stop Career Centers: Another Employment Resource

Work-Related Social Security Benefits

Work Incentive Programs

Transportation To and From Work

Accommodations on the Job

Equality at the Workplace

How Do I Plan My Young Adult’s Week When S/he is Working Part-Time?
RESOURCES 32
GLOSSARY OF TERMS 43
APPENDICES

Appendix A. Employment Planning List 47

Appendix B. Finding the Right Employment Service Program 50

Appendix C. People with Intellectual Disabilities in Jobs Across Massachusetts 53

As parents, we advocate passionately during our child’s school years until we reach that critical turning point when the entitlement of school ends at age 22.

Our advocacy cannot end. As our children grow and become young adults, we must make sure they are prepared for the adult world that lies ahead. That preparation involves work experience. Schools are essential partners in the preparation for this next stage. Assessing and exploring interests, skill development and on-the-job work experience should be written into a young adult’s transition plan at school.

Work provides important, ongoing benefits: it’s a way to build skills, make friends, give purpose to life, provide a sense of identity and, of course, earn a paycheck. It’s always challenging for young adults to find and keep jobs, and current economic conditions create additional hurdles. As you try to connect your child with work experiences, this booklet will assist you in understanding the roles of state and provider agencies, employment services, accommodations, benefits and much more.

As parents, we need to encourage work and internship experiences as well as explore our children’s interests in extracurricular and weekend activities. Regular chores such as caring for the family pet, folding laundry and raking leaves are all practical ways of developing a strong work ethic. There are also plenty of ways to contribute to your local community. Food banks and animal rescue leagues are among the community sites often looking for volunteers to help out. There is no shortage of possibilities. Watch and listen for what your young adult responds to and use that information to help him or her experience a range of activities.

Expand your network and let people know your son or daughter is looking for work. Asking is the key to success: ask friends, family and neighbors about job leads. State and provider agencies are tasked with finding employment for hundreds of individuals. Our children are our priority. We need to actively advocate for them, sell their strengths and support their needs.

Finally, we must teach our young adults to talk about what they are good at. No one goes to a potential job site and declares what they cannot do. To succeed, we all must adopt a positive attitude and the ability to be flexible; we all must learn and grow. This will open the door to new possibilities.

Wonderful opportunities exist in your own community. Find them and your young adult will access a fulfilling path to this next phase of life.

The influence of parents on their children is both subtle and powerful. From the earliest age, parents set expectations for their children in all different areas – how they will learn in school, how they will perform on the sports field, and how they will get along with others. When it comes to setting expectations about work, parents of young adults with intellectual disabilities need to convey the expectation that their young adults can work, can contribute, and can find great satisfaction in being part of the world of work.

In Massachusetts and throughout the country, young people with intellectual disabilities are becoming increasingly more successful as they transition from school to work. They are finding new pathways to careers as well as staying employed throughout their adult working years. Although employment outcomes for individuals with disabilities still lag behind those compared to individuals without disabilities, it is clear that enormous barriers to employment are being overcome. It is far more common now to see students and young adults with disabilities in a wide range of jobs throughout the community than it was even a decade ago.

This booklet is designed to help families of young adults with intellectual disabilities get started with the school-to-work transition process; learn about the resources, services, and programs available for young adults with intellectual disabilities; and find inspiration in the many success stories of young adults who have secured fulfilling employment with appropriate supports.

As the parent of a young adult with disabilities, you may face concerns as you look beyond the school-age years to your young adult’s future:

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  How will my young adult spend his/her days when school ends?
  
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  Given my young adult’s disability, is he or she capable of working?
  
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  Will my young adult lose important benefits if he or she enters the workforce?
  
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  How will my young adult find and manage transportation to and from a job?
  

It is important to know that your son or daughter can have a meaningful and rewarding life after the supports and structure of secondary school end. You can take steps to make this happen by:

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  Starting to plan early for a successful school-to-work transition
  
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  Encouraging your young adult to develop practical skills and build confidence in his/her abilities
  
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  Learning about available employment resources and supports
  
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  Working with your young adult’s school and the Department of Developmental Services (DDS) to get an employment plan in motion
  
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  Advocating for your young adult as well as encouraging self-advocacy skills
  

When young adults have work experiences while attending school, they are much more likely to find and keep a job after leaving school.

The Department of Developmental Services (DDS) is the agency within the Massachusetts Executive Office of Health and Human Services that is responsible for providing services and supports to Massachusetts’ citizens with intellectual disabilities.

DDS created this booklet to provide helpful information to families of young adults with intellectual disabilities in their transition from school to work. The mission of the Department is to support individuals with intellectual disabilities to fully and meaningfully participate in their communities as valued members. The Department believes that:

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  Employment is a valued role and expectation for all adults of working age in our society.
  
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  It is important to raise expectations about the capabilities of people with intellectual disabilities as individuals who are and can be successfully employed in a range of jobs and work settings.
  
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  Individuals with disabilities should be supported to pursue meaningful work that is a good match with their interests and abilities.
  
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  Individual employment in the community is the preferred goal, working in a job where the person is hired by an employer and paid wages and benefits commensurate with other employees.
  

Consider the language you learned during your child’s elementary and secondary school years. Expressions like IEP (Individualized Education Program), SPED (Special Education), mainstreaming, inclusion and pull-outs became commonplace in your vocabulary. Now it is time to learn another language as you plan for your young adult’s working life. This booklet includes and explains many new words and concepts, such as supported employment, person-centered planning, work incentives and One-Stop Career Centers. Welcome to this new language – this booklet will help you feel comfortable using it.

When your young adult is still in school, the services s/he receives are an entitlement. Once out of school, even though s/he may be eligible for adult services, such as those provided by the Department of Developmental Services (DDS), access to services depends on current state funding. This booklet will help guide you in making the most of the state programs, resources and supports that are available today.

Throughout elementary and secondary school, most parents of children with disabilities spend countless hours advocating for their children, reviewing their strengths and limitations, and requesting services that enable them to succeed in school. The advocacy skills you honed during those formative years will be extremely helpful as you and your young adult navigate the transition from school to work.

Emily, Amy’s mother, says that work has been the “difference-maker” in Amy’s life. Since her first job in a grocery store at the typical age of 16, Amy has continued to discover her own interests and skills, trying a number of jobs. Currently she is working in a retail setting. Emily tells us, “Amy’s paycheck has given her the money to do the things she wants: live in her own apartment, buy the most current fashions, go out to eat and take wonderful vacations every year. Work provides a boost to Amy’s self-esteem and an answer to the often-asked question, “What do you do?” Work has also been the place where Amy has developed the most lasting and consistent relationships in her community.” In response to the question “Have there been challenging issues to deal with?” Emily admits, “Sure: transportation, finding the right job and earning enough money.” Is the end result of having a job worth tackling these issues? Amy’s answer is an unequivocal and resounding “Yes!” And her parents agree!

When your young adult attends school, you have an invaluable opportunity to collaborate with school staff, alongside your child, to make sure all parties focus on employment goals and work preparedness; this type of teamwork leads to positive results when school ends. In this section, you’ll learn about the following:

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  Staying involved with the IEP process
  
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  Supporting your son/daughter to take an active role in IEP meetings
  
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  Preparing the Vision Statement that is part of the Transition Planning Form (TPF) for students aged 14 and older
  
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  Building work skills into the Transition Planning Form
  
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  Monitoring the Chapter 688 referral
  
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  Encouraging employment-related activities to prepare for the transition to work
  

The Individualized Education Program (IEP), familiar to most parents of children with disabilities, is an important planning document. Schools and families use the IEP to develop goals and objectives that support students in accessing all aspects of the curriculum, including academic and life skills. The team process of developing the IEP gives schools and families the opportunity to carefully plan for the student’s needs, both present and future.

Schools are legally required to adhere to each IEP, so it is extremely important that families agree with the services listed on the IEP each year, and view it as a binding legal document. Some families choose to bring an advocate or friend to IEP meetings to serve as note-takers and add observations about the student. By age 14, students should also attend their IEP meetings, so that they can actively participate in presenting their own goals and preferences.

One important and “safe” way your young adult can take on responsibility and build leadership skills is through IEP meetings. Your young adult has the right to lead IEP meetings and should have the opportunity to talk about his or her goals for employment and adult life. Parents can help make this happen by talking with the IEP team leader, well in advance of meetings, to make sure that teachers and school staff work with your young adult to prepare for a more active role.

Here are some ideas about what your young adult could do at an IEP meeting:

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  Introduce everyone
  
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  State the purpose of the meeting, such as planning for the future or working
  toward a career goal
  
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  Review the progress s/he has made since the last meeting
  
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  Share his/her IEP Vision Statement
  
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  Tell the team about his/her skills, hobbies, and job-related interests
  

For students age 14 and up, each school district is required to address the need for transition services in the Transition Planning Form (TPF). The TPF reflects the ongoing development of students, is maintained with the IEP, and is revisited annually. Included in the TPF is the student’s post-secondary Vision Statement, which is a more focused version of the IEP Vision Statement. The TPF Vision Statement helps guide future planning and should describe the student’s hopes and goals for post-secondary education/ training, employment, and adult living. 

One way to approach creating the Vision Statement in the Transition Planning Form (TPF) is for parents and students to draft independent vision statements for the student. A teacher or guidance counselor could be enlisted to help the student with this exercise. These two Vision Statements, along with comments and contributions of others at the meeting, can form the basis of a discussion on post-secondary goals and the steps necessary to achieve them.

At the annual TPF review, parents and students have the right to ask for services that will build work skills and help the student explore career options. Transition services and activities to incorporate into the plan might include:

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  Career interest inventories­­ – these paper and pencil assessments can help the student identify work interests and preferences. The results of these assessments can help to create specific employment goals.
  
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  Job Shadowing – the student follows an employee during a typical day on the job.
  
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  Mentoring - the student is matched to an adult mentor who serves as an advisor and offers guidance.
  
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  Apprenticeship – an adult professional teaches the student a specific trade.
  
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  Workplace visits and tours – the student observes different work settings.
  
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  Career Fairs and Career Days – local community members visit a school to share career experiences with an interested group of students.
  
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  Mock job interviews and job clubs with fellow students.
  
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  After-school and summer job placements arranged and supported by school staff.
  
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  Internships – paid or unpaid work experience for students.
  
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  Community college enrollment as a high school student – dual enrollment can ease the transition to post-secondary education and can help the student bcome part of a new community.
  

Schools can help students gain work experience by placing them in afterschool or part-time jobs with community employers. At age 22, Marissa was placed in a job at a Starbucks near her school. She stocked condiments and display shelves, washed counters and swept the floor. The staff at Starbucks came to know, like and consider Marissa an important part of their team. When she was preparing to end her placement because she was leaving school, the manager referred her to other local Starbucks managers. This led to a permanent, competitively paid job with benefits at a Starbucks nearby Marissa’s home.

At 22, students “age out” of the entitlement of special education services provided by the public school system, and they need to apply for adult services. In Massachusetts, there is a Turning 22 law for students who will require significant supports in adult life, often referred to as Chapter 688. The law mandates that schools must complete the Chapter 688 Referral Form two years before the student exits school or turns 22 years of age, whichever is earlier.

The Chapter 688 Referral is a simple one-page document that identifies services the student will need after leaving special education. By signing the form, parents give permission for the school to send records to appropriate adult disability service agencies, such as the Department of Developmental Services (DDS), Department of Mental Health (DMH), and Massachusetts Rehabilitation Commission (MRC). With sufficient lead-time, these state agencies are better able to effectively plan employment services and supports for young adults who are eligible for them. DDS and other agencies are committed to working with families to ensure as smooth a transition to adult services as possible.

It is important to note that the Chapter 688 referral must come from the school. Parents should monitor that school staff are on schedule with making the Chapter 688 referral, that the referral is discussed at the IEP meeting, and the paperwork is submitted on time. It must be signed by the parent, legal guardian or student who is 18 years of age or older.

Chapter 688 Referral tip

Sometimes schools are unsure of eligibility requirements at state agencies. When in doubt, tell the school to fill out the Chapter 688 referral and send it to the adult service agency the school thinks is most appropriate. The adult service agencies will take over from there. From time to time there may be changes in the referral procedure; check with your school for updates.

Preparation for work and collaboration with school and state agencies improves the likelihood that students will move into employment and careers after high school; students with even the most difficult challenges have demonstrated that they can be successful moving from school to work or to more education. Furthermore, young adults with disabilities who pursue further education and/or job training end up exercising more control over job choice rather than simply “taking any job.” For these reasons, it is critical that schools help young adults get ready for employment by setting expectations and providing career preparation and work experiences.

With support, there are a number of ways your young adult can take an active role in identifying career goals and preparing for the world of work while in school:

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  Talk to teachers, other adults and older siblings about work and getting involved in the community
  
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  Participate in a range of career exploration and job seeking activities, with the guidance of school staff
  
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  Choose high school courses that match work goals
  
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  Learn employment-related skills
  
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  Report what s/he liked or disliked about every work experience
  
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  Explore and build on interests and hobbies through activities at school, at home, and in the community
  
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  Practice “taking charge,” such as gathering information and making appointments
  
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  Practice describing his/her abilities, disabilities and the services s/he is entitled to
  
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  Take on increasing age-appropriate responsibility and build independent living skills
  

“My husband and I are committed to teaching Nicole how to be independent. We hope that someday she will feel comfortable enough to venture out on her own with confidence and minimal supports, and have a life filled with choices and opportunity.”