Orchestrating the Supports a Person Needs
Visioning reveals the community pathways and roles likely to offer a person the best chances of a good life. Organizing supports orchestrates the supports a person needs to immerse themselves in these community pathways and roles.
FMS provides a family with money to employ staff who assist a person to realize the family’s vision and plan. To make the best of this resource it’s important to be clear about how those employed with FMS dollars can make the most difference in the person’s life.
Some families haven’t yet seen good reasons to commit to immersion in community pathways. They may see staff as companions in activities the person enjoys, or providers of respite for family members, or supervisors and instructors who assist the person to follow a program, or as helpers in doing certain jobs.
Experienced families recommend setting the staff member’s job in the context of a bigger vision. Answering these questions in conversation with others who know the person will help define the most valuable contributions staff can make.
- What support does the person need in order to be successful on chosen community pathways?
- How does the FMS paid staff member fit with other supports available to the person and what is the staff member’s distinctive contribution?
- What will make the best possible match between the staff member and the person and family?
What support does the person need?
It’s a matter of fact that people with developmental disabilities have differences in body and mind that can impair their immersion in community pathways. Good support reduces the effect of a person’s impairments on their ability to participate. Families have a good idea of what works to support a person and are best positioned to define necessary supports in conversation with others who know the person.
A staff member provides the specific assistance a person needs to build and sustain good relationships with the people and places on the community pathways they choose. It takes good judgment and skill to encourage support from others on the pathway and avoid standing between the person and others on the pathway.
Good support takes multiple forms, including these:
- Connection: Someone supports the person to introduce themselves to people and places on a new community pathway and scout what is necessary to begin participating. This could involve representing another person to arrange an introduction and request any accommodation that might be necessary to help the person across the threshold.
- Technology: A person uses a communication device or a wheelchair engineered to make it easy for them to participate, or a smart phone app that guides a person through the sequence of an important activity or a scheduled alarm that reminds them it’s time to get ready for work.
- Accommodation: A college instructor or university professor modifies assignments. An employer customizes a job to make an employee more productive. An amateur league modifies a rule to allow a person to play.
- Systematic instruction: A person gets an individually tailored opportunity to learn a skill that is relevant to their success.
- Direct assistance: Another person directly guides participation, or provides parts of a necessary action that the person cannot, or backs the person up when difficulties come up.
How do FMS funded staff best contribute?
One of the biggest advantages of community pathways is that they already have a variety of effective ways to support successful participation. Good businesses have ways to bring on new workers train them and support them to do a good job. Artists co-ops have ways for members to support one another’s work. Civic groups know how to guide members as they find ways to contribute. Universities have supports for any student who has difficulty learning in a class. Often what works for any other person will work for a person with developmental disabilities, sometimes with modifications for individual differences.
What already works among the people and places a person belongs in or wants to join is the point of departure for organizing supports. As experience with inclusion grows, more community places have already learned that, often, simply treating a person with developmental disabilities like any other participant while taking account of obvious needs for support is the best place to start. Some people will need extra support for a while, perhaps because they need more practice than is typical to learn a skill. Some people may need extra support with particular responsibilities on a continuing basis. Trying to be too exact in predicting how much of what kind of support will bring success doesn’t help as much as staying flexible and following the person’s lead as they join in and discover what they can do, where they need assistance, and who can provide it. Over-supporting a person can create unnecessary distance between the person and what is naturally available in the place they belong.
Wendy McDonald: At work, Kyle doesn’t have any disability funded support. He is naturally supported by his colleagues. There are a couple of tasks that he can’t do, so his job description was modified. Kyle uses his iPhone for keeping track of his schedule & for reminders.
There are many possibilities for collaboration among the sources of support pictured in the circle above. A paid staff member can join a family friend, a person and their supervisor at work to resolve an issue that could threaten the person’s employment. A mental health professional can join a person’s sister and a family friend who is a pharmacist to untangle prescribed medications that work against each other and the person. A coworker who lives nearby can swap rides to work for gas money and some yard work and snow shoveling. An employment specialist can assist an employer and a person’s coworkers to prepare the person for promotion to a more complex job. A former teacher can collaborate with a technical school auto mechanics instructor to adapt reading assignments.
When organizing support is working well the number of these collaborations grow and grow more interesting. Depending on the current situation, an FMS paid staff member who has or is willing to develop the necessary skills and knowledge could offer any form of assistance from prospecting for opportunities on a new community pathway to developing a way for a person to learn a new skill that matters to them.
No matter what, an effective staff member always looks for opportunities to encourage, expand and deepen the person’s immersion in community pathways. One important aspect of that work is finding ways to increase the support that comes from inside the places where the person participates and the supports available to anyone in the community. These shifts come easier as the person contributes more and builds personal relationships. Those who assist a person with at home routines –such as leaving the house ready for the work day or planning and preparing healthy meals–contribute to community engagement as well when they recognize the connection between the help they offer and the person’s participation in community life. They can help a person think through their work day or make sense of a confusing situation or schedule coffee with a friend. No task should be disconnected from awareness of the vision that animates support.