RRTC on Advancing Employment for People with IDD
State of the Science Paper on Engaging Families
Accessible Version 

Introduction: What this paper is about
Since 1984, there has been a lot of work done to help people with intellectual and developmental disabilities, or IDD, get jobs in the community. Some people have been matched with employers and have jobs that are a good fit, and others have started their own businesses. Agencies that operated sheltered workshops are helping more people find work in their communities. Many states have “Employment First” policies, which say that working in the community should be available to everyone. 
     But even with all of these good things happening around employment, for the past 15 years, the number of people in jobs in the community has not really grown. 
Our research center is tackling this problem. This center is part of ThinkWork! at the Institute for Community Inclusion at the University of Massachusetts Boston.
This project looks at it: 
1. how individuals and families get information;
2.  how employment consultants do their jobs; 
3.  how agencies transform their services so that more people work in the community;
4.  policies at the state and national level that affect employment. 
This paper is about how individuals and families get information about employment.  

Families are really important when it comes to people’s opinions about work. They can influence how people feel about work or if they want to work. But sometimes they do not know how to help people actually get jobs. They may get confusing information from systems, like the IDD agency, or the VR agency, or from their school systems. Families end up feeling powerless, and doubting what role they can play in helping their sons and daughters find jobs. 
     The goal of this paper is to see what research already exists about this topic, and then to share results from interviews with people with IDD and their families. 

Main findings from the research that has already been done:
1) Family members’ role modeling and expectations are important. 
2) When employment professionals work with families, it can lead to more people finding jobs. 
3) The characteristics of families (for example, if they have access to a lot of resources or only a few resources, if they are immigrants from another country or not) may affect whether or not people have jobs. 

Main findings from our interviews: 
We reached out to families through an online group, through Facebook, and through in-person meetings. We asked about: 
•	Where do individuals and families get information on employment? 
•	What kind of information is useful and important? 
•	How can families best work with employment professionals? 

In total, we talked with 80 people. Overall, families said: 
1.	The service system can give confusing advice; different agencies have different rules and goals.
2.	Sometimes professionals have low expectations about work for people with IDD. 
3.	Services don’t match what people want. 
4.	Sometimes self-advocates and families do better on their own, without professionals helping them find jobs. 
What does this all mean? 
Our research shows that engaging families is important for employment, but families and individuals feel frustrated with the process. 

What we recommend:
1. Train staff on how important it is to work with families either face to face or in ways that work for them (for example, with text messages or through social media).
2. Help local folks talk to each other. Even though state agencies may work hard to be partners around employment, this does not always happen in local communities. Many people said that VR and the school system barely talked with each other and sometimes had confusing messages about employment and people with disabilities. Agencies need to share information with each other, and with the families they support. 
3. Help families become empowered and stay strong; learn from them about what works. Families sometimes “go it alone” and may see more success that way. Families know a lot about their family members with IDD. They may also have a lot to teach professionals about working in a system with limited resources. 
For more information about this paper, please contact allison.hall@umb.edu

State of the Science Paper: 
Organizational capacity (focusing on community employment providers)
Accessible Version 

Introduction: What this paper is about

Since 1984, there has been a lot of work done to help people with intellectual and developmental disabilities, or IDD, get jobs in the community. Some people have been matched with employers and have jobs that are a good fit, and others have started their own businesses. Agencies that operated sheltered workshops are helping more people find work in their communities. Many states have “Employment First” policies, which say that working in the community should be available to everyone. 
     But even with all of these good things happening around employment, for the past 15 years, the number of people in jobs in the community has not really grown. 
Our research center is tackling this problem. This center is part of ThinkWork! at the Institute for Community Inclusion at the University of Massachusetts Boston.

This project looks at: 
1. How individuals and families get information
2. How employment consultants do their jobs
3. How agencies transform their services so that more people work in the community
4. Policies at the state and national level that affect employment
This paper is about how agencies transform their services so that more people work in the community. 

In the United States, people with IDD looking for jobs mostly get help from agencies called community providers (CPs). Most CPs used to just find people jobs at sheltered workshops. But the CPs are changing now, because more people want to live and work in their communities.  We have new laws to help them do that. 
Some CPs have been able to transform their services, but other CPs have had a hard time or haven’t started yet. Changing a CP is a big deal, because CP staff have to think about why they’re there and whom they want to help. They also have to figure out how to make many changes and pay for the changes. Many CP directors haven’t made these changes before and haven’t helped people get jobs in their communities before, and other CP staff don’t always know how to help either. Sometimes, other staff and families don’t want the change, because they’re worried about what will happen when people leave a sheltered workshop and work out in the community. 

     The CPs hire employment consultants to help people with IDD get jobs. Employment consultants get to know the job seekers, and help them find jobs. They also support the job seekers before they start the jobs and once they are on the job. Employment consultants also have to get to know employers and what they need. 
     Once people are hired into the jobs they want, the employment consultants have to help them keep those jobs. The CPs have to make sure the employment consultants are trained to do all these things. 
     When we were writing this paper, we talked to experts about how to help CPs change. We also interviewed employment consultants and other people about how to help more people find jobs. 
 
What is needed for CPs to change?
We asked 36 people to tell us what they thought CPs needed so they could transform their services. The group included professionals, trainers, family members of people with IDD, and self-advocates with IDD. 

Here is the list of the top ten things CPs need to pay attention to:
1.	Set up clear goals to help people get jobs in the community.
2.	Value inclusion of people in the community.
3.	Find one job for one person at a time.
4.	Talk to people often about expecting to find jobs in the community.
5.	Make sure everything they are doing is about finding people jobs in the community.
6.	Make sure staff training is up to date.
7.	Think of everyone as customers, whether they are job seekers, family members, or employers.
8.	Find ways to measure how well CPs are doing at finding people jobs.
9.	Help people find jobs that will fit well with their plans, support needs, resources, and other parts of their lives.
10.	Work with schools and other community organizations to help people find jobs.

What do good employment consultants do?
We interviewed 43 people including employment consultants, their supervisors, job seekers with IDD and their family members. They said that there are five things that the best employment consultants do:
1.	Let job seekers know that they will work together to find jobs in the community. 
2.	Get to know the job seekers.
3.	Find jobs by networking in the community, talking to the family, etc.
4.	Support job seekers before they are hired. This means helping them learn work and social skills, figure out transportation, answer questions about benefits, etc.
5.	Support job seekers after hire. This means making sure things are going well at the new job.

We are also looking at how employment consultants decide what they will do to support job seekers, and finding out how they use their time. 

What does this all mean?
Agencies can only transform their services if they have employment consultants who are good at their job. Employment consultants work best for agencies that believe in inclusion. 
What we recommend:
1.	Track what employment consultants do with their time at work to see if some activities help more people find jobs.  
2.	Study how employment consultants help people in different situations.
3.	Look at the different jobs agency staff have and how that affects how many people with IDD get jobs in the community
4.	Find out what kinds of training are available for employment consultants. 
5.	Study which strategies are helpful and also don’t cost too much.
6.	Look at the way people at the agency communicate about employment and how that affects the number of people working in the community.  
For more information about this paper, please email allison.hall@umb.edu

RRTC on Advancing Employment for People with IDD 
State of the Science Paper: 
Policies of states that are good at helping people with IDD find jobs
Accessible version

Introduction: What this paper is about
Since 1984, there has been a lot of work done to help people with intellectual and developmental disabilities, or IDD, get jobs in the community. Some people have been matched with employers and have jobs that are a good fit, and others have started their own businesses. Agencies that operated sheltered workshops are helping more people find work in their communities. Many states have “Employment First” policies, which say that working in the community should be available to everyone. 
     But even with all of these good things happening around employment, for the past 15 years, the number of people in jobs in the community has not really grown. 
Our research center is tackling this problem. This center is part of ThinkWork! at the Institute for Community Inclusion at the University of Massachusetts Boston.

This project looks at: 
1. How individuals and families get information
2. How employment consultants do their jobs
3. How agencies transform their services so that more people work in the community
4. Policies at the state and national level that affect employment
This paper is about policies and practices that states use to help people get jobs.

People who have jobs are happier and healthier, and feel like useful members of their families and communities. All over the United States, people with IDD are getting help from their states and communities to find work. The Department of Labor and other government agencies want people to know about “Employment First,” a policy that means that people with disabilities should have the chance to work. Employment First is in almost every state, and it has helped people with disabilities become more independent and part of the community. 
However, many people with IDD who want jobs still do not have them. As a person from Self-Advocates Become Empowered (SABE) says: “just calling your state an ‘Employment First’ state is not enough; it’s when everyone who wants a job actually has a job.” 
Besides Employment First, there are other new rules to help people with IDD live where they want to and work in their communities. Because state and federal money pays for services, states have to follow the rules or they won’t get the money to provide services. The states that help more people with IDD live and work in their communities do a good job following these rules. They are called “high-performing” states.
     When we wrote this paper, we looked at what state agencies were doing to make sure that helping people get jobs was a priority. Then, we looked at information from the states about what happened for people with IDD. So, we looked at what states were doing, and what outcomes (job or no job) that resulted for the people receiving services. 

What we found out from our research: 
What type of people are more likely to be working? 
We looked at data from the National Core Indicators project.  This data is collected in many states on people who are supported by their state IDD agency. We found that the people who were in the day programs and not working were usually younger people, women, and people with legal guardians. This means that we need to make sure that women get as much help finding jobs as men, and that guardians get information about helping people with IDD get jobs. 

How do states compare to one another?
We’ve been keeping a “scorecard” by state that shows how well different systems like the school system, vocational rehabilitation, or the IDD system did helping people with IDD get jobs. The states with the highest overall scores for their systems are the high-performing states. These states (in order, starting with the highest) were: Maryland, New Hampshire, Vermont, Oregon, Washington state, Iowa, Oklahoma, South Dakota, Colorado, and Delaware. However, no state scored high in every area (education, Vocational Rehabilitation and IDD). Next, we plan to look closer at what these states are doing to get these high scores. 

What is happening in Maryland, the state with the highest score? 
When we do case studies, we take a closer look at one thing. When we were studying the states, we took a closer look at Maryland because it got the highest scores in employment. We learned that in Maryland, the different agencies that help people with IDD have worked together for a long time. People at these agencies talk to each other easily. They share information about how to get people jobs, so that all the agencies across Maryland know how to do it.

What else are we looking at? 
Some of the other questions we are interested in are:
•	How are states helping people before they get jobs?
•	How do we make sure case managers always think about employment for the people they serve?
•	How can agencies support people to get jobs, and also support them with the rest of their lives?

What does this all mean?
It seems that some type of people (men, people who don’t have guardians) are more likely to be working in the community as compared to others. Also, some
states are better than others when it comes to their different agencies working together to help people with IDD find jobs. 

Recommendations: 
We have to keep studying what states are doing about Employment First and how their practices affect employment for people with IDD. That will let us be clear about what helps people get the jobs they want. We especially need to keep doing case studies of what’s happening in the high-performing states. 

We also have to make sure that the practices work fairly for men, women, people with guardians, people without guardians, people in day programs, and everyone else who wants a job. It is important that professionals that work with people with IDD, like case managers, understand that employment is a priority for everyone. 

For questions about this paper, please email allison.hall@umb.edu