WHAT DO MEMBERS WANT FROM PEOPLE FIRST?

People First leaders need to know what members want from People First. Local People First chapters get stronger when their leaders help their members get more of what they want. The state People First organization gets stronger when its leaders help local chapters get more of what they want. The state People First organization gets stronger when its leaders help local chapters get more of what they need to help their members.

On 4 May 1991, about 50 Washington People First members and officers met for a day in Seattle to discuss what they want from People First. John O'Brien and Connie Lyle O'Brien led the workshop and prepared this record from the big wall charts they made during the meeting to keep track of what people said. The words and ideas in this record are those of the people who participated in the meeting; John and Connie organized people's works and ideas into this record.

We asked:

• Why do people join People First?

• What problems do People First members face?

• How can People First make a difference to member's concerns?

• What can the state People First organization do to help local chapters

Based on the discussion, we identified...

Questions to Ask about People First Chapters

Why Do People Join People First?

• "Because at the center of People First is a universal concept of human right. Everybody is valuable. Everybody has the right to think and decide for themselves. Everybody has the right to speak up and be heard. Everybody has the right to participate. But because people have disabilities, their value and rights can easily be violated."

• "People First is a safe place for me to be outside my family."

• "I don't have a family. For me, People First is my family."

To make friends and participate in activities

• "I wanted to meet new people and make new friends."

• "I wanted to get to know people and find out what other people like to do."

• "I needed more to do. I was just staying in all the time. I was sky but [a People First advisor] asked me to join, so I did."

• "It makes me feel happy to share things with other people."

• "I wanted to travel and go to conventions."

• "I like the activities, like fund raising and making things for conferences."

• "I like to make other people happy, like when we celebrate people's birthdays and I pass the plates around."

To grow in ability to help myself and other people

To speak up

• "I was shy and I wanted to learn to speak up for myself."

• "I need support to move out on my own (it's been a long time and I'm still not all the way out)."

• "I needed help getting the confidence to get a job."

• "I want to have responsibilities to help plan and do activities and to be an officer."

• "Being Sergeant-at-Arms has made me stronger."

• "People First has given me chances to keep growing from local to state offices."

• "I want to keep learning to communicate better when I participate in meetings or do public speaking or appear in videos."

To solve problems

• "I want to learn to solve problems."

• "I want to help other people learn to speak up for themselves, and solve their own problems--like my friend who had a problem with his landlady.

• "Some problems are very hard to solve. The only thing you can do sometimes is just be there for a person."

• "Sometimes People First members get angry or abusive with each other. Each person has to be responsible for themselves and each person has to think about what's best for other members. This can be really hard when people's feelings get hurt."

To be an advocate

• "I like to encourage people who are shy to join in and talk."

• "I want to be an advocate for people who can't speak up for themselves."
  

• "I like to see other people become stronger by getting involved in People First."
  

• "I really like helping to set up new People First chapters."

To make changes in unjust and ineffective services and systems

Having a say

• "I want to make sure that People First members are represented on boards and committees and councils so that we a say so."

• "I want people who make decisions about our lives to listen carefully to what we think and what we really want."
  

• "I want to get myself and other people out of the institute and into our own homes."
  

• "I want everyone to have the chance for a real job."
  

• "I want to go to Olympia and show legislators that people with disabilities are not devoid of ability."

What Problems Do People First Members Face Now?

Some People First members are still completely involved with disability services. So People First needs to keep working on making residential services and day services better.

Better services that respect people's rights

• "I'm still living in a nursing home. I need my own apartment. And so do all the other people who are still in institutions."
  

• "Lots of people with disabilities are still in workshops and activity centers. They need a chance for a real job."
  

• "Some job coaches have a bad attitude. They act like they own you; not like they are there to work along with you to help you do a good job."
  

Some People First members live with their parents or other family members.

Adult relationships with parents

• "My parents worry because there aren't enough tenant support programs forme to move out. And I want to be sure there is someplace for me to move when my parent's can't take care of me any longer."
  

• "The parent pay for DD services bill that's come up in the legislature would be a real problem for my parents. And what about people who work, will they charge us for the help we need? That would take back a lot of my money."
  

• "Sometimes you have to say 'no' to your parents. Especially when they don't treat you like an adult."

A growing number of People First members live and work in community apartments and jobs. More and more of the issues they deal with are not so much related to disability as to low income.

Housing

• "It costs a lot to have a decent place to live. Once I pay my rent and my bills, I don't have money to even go to a move. Lots of activities cost money."

• "There needs to be a lot more affordable housing."

• "There needs to be a lot more housing that is accessible."

• "The wait for money to help with housing is very long."

• "I want to write a check from my own checking account every month to pay for my own condo."

• "Lots of people don't have good homes but they keep tearing down good housing to put up apartments that are too expensive for low income people to afford. That isn't right."

• "The people who run the public housing don't respect the rights of people who live there."

Transportation

• "Transportation is a big problem. There isn't much bus service at night and now I have a night job."

• "The buses stop running early in the evening. So if you want to go out and you can't get a ride, forget it."

• "Para-transit doesn't work very well for me."

• "There was a bus shelter right across the street from where I live. It got torn down when they built new apartments over there. But they didn't put the bus stop back. Now I have to walk a long ways. I want to them to put the bus stop back."

Jobs

• "I have a good job that I like. But it doesn't pay enough, so I'm broke all the time. It's not fair."

• "I got turned down for health insurance because of my disability; so I can't work as much as I could if I didn't have to stay eligible for medical coupons."

• "I had a job, but it didn't pay much. I asked the job coach to help me find a better job but they said no. So I told them all to go to hell."

• "I have problems with a mean supervisor at work. I walked off the job. But I'm not sure that was the best thing to do."

• "I got fired from my job. I don't know if it was fair or not."

Personal/Social Concerns

• "Lots of community people still downgrade us in their minds because we need help. Social attitudes still stink. Discrimination will only go away when people get to know each other. People First needs to support members to get out and meet people."

• "Since my mother died, I've been thinking about dying, funerals, and wills. I'm afraid that unless People First helps me make arrangements, I'll end up being buried by the state. I don't want that."

• "I'm getting old. People First needs to pay attention to what older people will need to have a good life."

How Can People First Make a Difference to Member's Concerns

Have a say in decision making

• Make sure that People First is represented on the boards and committees that make the rules and the plans for services: like supported employment, county services, and residential services. People First members who are part of these groups may need help from People First to...
  
  • ...be there

  • ...figure out what's happening

  • ...ask questions

  • ...speak up for People First member's concerns

  • ...bring back ideas and information

• People First members need to get together to work out our position on new services like supported employment and tenant support. Some things are the same as they were with older services, but some things are new and changing.
  

• Be sure that interested People First members go to public meetings about important community issues...
  

  • ...housing

  • ...public transportation

  • ...school funding (so kids with disabilities get the help they need)

  • ...jobs

Provide good information

• Share information about changes in laws and benefits like...
  
  • ...how to sign up for housing assistance

  • ...DDD's plans to help some people buy their own houses

  • ...people who build new apartments have to make some of the units accessible

  • ...job opportunities (like the new federal jobs program)
    

• Help members share information with each other about...
  
  • ...job leads

  • ...good places to go (like the "Y")

  • ...lawyers

  • ...doctors and dentists

  • ...schools and training

Encourage members to participate

• People First should help members integrate into community groups so people will get to know us better and won't put us down.

Help people speak up for themselves

• People First members and advisers can help members figure out what to do about their problems and coach members so that they can learn to speak up for themselves.
  

• People First should help members represent themselves when they are treated unfairly by employers, by landlords, or by service providers.

Support one another

• People First members need to support each other to make People First a safe place to be. Members should...
  
  • ...listen carefully to each other

  • ...settle problems with each other

  • ...reach out to get new people involved

We have to keep reminding each other of important truths:

• There is strength in numbers.

• We have to know our political power.

• Advocacy is an everlasting struggle in our society.

• You have the right to think and speak for yourself.

• You have the right to say no to people who abuse you or take away your rights. Complaining about bad treatment is a human right.

What Can the State People First Organization Do to Help Local Chapters

• "Members get frustrated with trying to get what they need from agencies that don't work. We need to learn how to make changes faster."
  

• Bring members together from different chapters...
  
  • ...to define issues and goals for system change

  • ...to figure out what to do about making local chapters stronger

  • ...to work on getting better at changing the system and local services
    

• Find out and share information...
  
  • ...about what works to solve chapter problems

  • ...about good activities for chapters

  • ...about changes in federal and state laws, rules, and plans

  • ...about what to do locally to make the most of system changes
  
  

• Identify people who can help work on changing services and systems when local people can't figure out what to do.
  

• Identify people who can help work on changing services and systems when local people can't figure out what to do.
  

• Join together with other groups working for change so that we will have stronger strength on money issues like housing assistance and medical assistance.
  

• Offering people opportunities to grow by being involved in state activities.
  

• Raising money through grants so that there are more opportunities for all members to get more skillful at problems solving.
  

Some Questions to Ask About Your People First Chapter

A good People First chapter gives members chances to meet other people, be involved in activities, and make friends.

• How do we reach out to invite new people to join?

• How do we work with people's parents or residential service providers if they have questions about whether or not someone should join People First or if they make it hard for a member to participate?

• How do we make new members feel welcome?

• How do we help members who are angry with each other or jealous of each other to settle their difference?

• How do we find out what activities different members like and schedule a variety of activities at convenient times and places?

• How do we learn what to do if a member needs some extra help (for example, with communication, or with transportation, or with taking care of seizures)?

• How do we identify members who are not active and help them get more active?
  

A good People First chapter gives members chances to grow by accepting responsibilities.

• How do we share responsibilities and opportunities among members...
  
  • Officers jobs

  • Organizing and leading activities

  • Taking trips and attending conventions

  • Representing People First on boards and committees and at other meetings
    

• How do we make sure that a chapter is doing enough different things so that every member is needed for something?
  

• How do we raise enough money to let as many people as possible take trips and go to conferences?
  

• How do we help members learn to...
  
  • Participate in meetings and activities

  • Think up new ideas and solve problems

  • Speak up for themselves

  • Help other members learn new things

A good People First chapter helps members make changes in services and systems

• How do we find out what issues matter the most to members?
  

• How do we figure out what changes to speak up for?
  
  • Getting information about what is happening to members

  • Finding out what is supposed to happen according to laws and rules and plans

  • Getting information about what other people have done to solve the problem

  • Deciding what changes to work for

• How do we get people that run services and systems to change them so that they will work better for People First members and other people with disabilities?
  

This paper was supported through a subcontract from the Center on Human Policy, Syracuse University for the Research and Training Center on Community Living. The Research and Training Center on Community Living is supported through Cooperative Agreement No. H133B80048 between the National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabiltative Services, U. S. Department of Education, and the University of Minnesota, Institute on Community Integration. Members of the Center are encouraged to express their opinions; these do not necessarily represent the official position of NIDRR.