What do you do when something doesn’t feel right? Individuals or family members often
delay expressing dissatisfaction. They don’t want to rock the boat; let’s wait –things will get better. Families also defer their need for assistance.
The main themes of late include:
- Lack of staff or fear of losing staff for home
- Lack of employment
- Inability to obtain help for additional resources
One story is about Cynthia (her name has been changed for her privacy) who is 27 years old. She had worked in a clothing store during high school assisted by a school job coach. Cynthia communicated mainly by non-verbal means but she learned her routine well at work. She was successful by all standards. When she graduated, she was able to continue at her job, receiving supported employment services from an agency. But she lost her job after cutbacks at the store.
Cynthia found herself at the agency work center doing odd jobs, spending a few hours a week volunteering and a few hours each day in a day habilitation setting. One of her goals was improving communication skills. No one attempted to help her get a new job for several months. At the next planning meeting, Cynthia’s mother, Grace asked if the agency could begin job exploration for Cynthia. They said they would be happy to do so but couldn’t commit to a start date until the team reviewed resources with the program director. Grace asked if it was reasonable to give her some start date before the month ended. And the staff said yes.
Weeks passed and Grace followed up. Grace was tempted to let it go but realized that the longer Cynthia was not employed or being trained for employment she would lose critical skills and habits. It took two more months of approaching staff and then supervisors, but she was able to get Cynthia a specific plan around training at different job placements. The job would be part-time but it would be a start.
As a parent, Grace served as Cynthia’s advocate. Ideally Cynthia would also self-advocate too. During one of the meetings, Cynthia did indicate she would like to work as she did in the past. Grace and a friend had prepared her for the meeting. Cynthia used photos from her past job and pointed to them during the meeting.
I think there are a few points to remember as a family member or self-advocate.
- Listen to yourself; trust your instincts. Keep relationships as positive as possible. But if you wait too long, feelings of frustration could easily result in negative interactions.
- Talk to staff supervisors directly to share your concerns. If you are not sure how to present them, you may want to go beyond your family and ask a friend’s input. Perhaps you can present one or two solutions to the problem.
- If you experience resistance, ask for a meeting to explore barriers. Using employment as the goal, ask the supervisor his or her reasons that movement can’t be made. For example if it’s resources (we can’t train Cynthia 1:1 for employment at a specific job right now), perhaps they can do it on a part-time basis. If staff say “we don’t believe Cynthia can work”, (a more extreme statement) then it would require Grace to talk to the director of the program or whoever was the next level supervisor. This shouldn’t be done in a threating manner but just as a matter of fact. “I’m sorry to hear that you feel that way but Cynthia has successfully worked and your statement is disappointing to me. I need to talk to your supervisor to discuss the matter further.”
- Place the responsibility on the agency to justify its position, if staff continue to resist take your concern to the next level. Keep trying and don’t stop until you speak to a senior manager.
- If the situation is still unresolved, it may be time to explore other agencies, which may have a different policy. You can also appeal to the state agency (DDS, MRC, etc.) prior to this step, and ask its representative to assist depending on the concern.
Most of the time, the concerns will be addressed. You will want to thank the supervisors once the matter is truly resolved. Building a strong rapport is worthwhile for the long run. It’s also good to make sure you meet new supervisors if there is turn over and spend some time providing key information about your family member. For self-advocates, taking the time to know the team working with you is wise as well. The more an individual can self-advocate the better.
Addressing concerns early is best but it’s never too late. Remember a few key facts if you’re following up about something that has been going on for a long time.
- You may be frustrated about this longstanding problem but it may not even be something the staff are aware of due to lack of knowledge about the individual or just being comfortable with the status quo;
- Watch the words you use in talking to them- if you get them on the defensive with a statement like “I can’t believe you’ve been doing this to Cynthia for years”, they may harden and focus on justifying the status quo.
- Realize the resolution will take some time as you’re undoing a perception that has built over time.
- If you’re doing it on behalf of a family member, he/she may need time learn to self-advocate about this issue. After all he or he has accepted as the status quo too unless the individual has been complaining at home.
Trust your instincts and don’t hesitate to advocate when things don’t seem right. You are not only helping yourself or your family member, your advocacy is improving the way supports are provided.
Article by Leo Sarkissian