GETTING STARTEd

There are so many aspects to creating and operating a community like the one Bob and Ginny helped found at High Spirit that it's hard to know where to start.

We hope that some of the questions we asked, the information we gathered, and the lessons we've learned, can make your decision-making process a little easier. There are no silver bullets, but with teamwork, patience, and perseverance, you can make something happen that, ultimately, seems almost impossible today.

WHERE ARE YOU NOW?

If you have made it to this point on our website, chances are you are not fully satisfied with your current options for caring for your child or young adult charge. You might be interested in exploring alternatives – or maybe, like Bob and Ginny Swain, creating your own residential community tailored to the special needs or interests of your child and others like them.

One useful place to start is by asking yourself: what’s been missing? Is that something we might hope to find or create?

Bob and Ginny went through this very exercise - talking to each other, a few others, and musing to themselves - before they had a clear vision of High Spirit. They asked themselves: what does Bar love to do? What kind of environment would enable him to not just grow but thrive? Would it be better to keep him at home? Are there other options that would be a better fit?

Mark and Cindy went through a similar process as they began to design a sister community, High Spirit East, for their daughter Mira. Listen to the story of their early days.

Hopefully, you have determined, as specifically as possible, what you don’t have and have begun the process of ideating what you do want. So now is the time to get a bit more concrete, laying out a clear and sharable picture of the community you would like to build. A vision statement and a mission statement can help you get there.

Understand that writing these statements is almost never straightforward. You will likely go through several drafts and might be frustrated by how time consuming – and challenging – it can be. But, as parents and founders like Bob and Ginny can tell you, it is well worth the effort.

One important consideration to keep in the back of your mind as you do this: remember you are, first and foremost, building a community. Even if you adopt a legal structure as a non-profit, you are not creating an institution. The often subtle or misunderstood difference between the two is something that professionals like Dan McKanon of Harvard Divinity School, who specializes in intentional communities and their role in supporting disabled members of society, keenly understand. Watch as he talks about community in the context of meeting your child’s needs, however he or she may express them.

You have answered some core questions about what you don’t have and have begun the process of ideating what you do want. So now is the time to get a bit more concrete, laying out a clear and sharable picture of the community you would like to build. A vision statement and a mission statement can help you get there.

Understand that writing these statements is almost never straightforward. You will likely go through several drafts and might be frustrated by how time consuming – and challenging – it can be. But, as parents and founders like Bob and Ginny can tell you, it is well worth the effort.

One important consideration to keep in the back of your mind as you do this: remember you are, first and foremost, building a community. Even if you adopt a legal structure as a non-profit, you are not creating an institution. The often subtle or misunderstood difference between the two is something that professionals like Dan McKanon of Harvard Divinity School, who specializes in intentional communities and their role in supporting disabled members of society, keenly understand.

WHAT IS YOUR VISION?

Vision and Mission Statements

As you choose what feel like the right words for your vision and mission – and keep in mind, shorter is often better – think about some of the characteristics or values you think it might be important to include. For Bob and Ginny, the mission had to be explicit, not only about the role they hoped High Spirit would play as a model residential program for intellectually disabled young adults but also with regard to the qualities of the environment and the work, enjoyed by all residents and visitors to the farm: meaningful, dignified, and rich.

Here they describe some of their drafting process.

Thanks to the clarity of their mission language, the Swains opted not to commit to a written vision statement. Nor did they feel the need to create a separate list of values that animate all the activities that occur in and around High Spirit. You might feel otherwise and encouraged to take that additional step, especially if you think it will be useful as a guidepost as you move forward.

What can the GOVERNMENT do for you?

The good news is that agencies tasked with the responsibility of providing oversight and support for intellectually disabled young adults (from financial resources to training and professional development, as well as state-directed programs, research, and facilities) are there to help. The bad news is that what they can offer – and what they may require from you – varies significantly by state.

The "Resources- States Directory" on this site provides a state-by-state list with links to relevant agencies and/or organizations to help guide you. If any of the links seem outdated to you or are no longer working, please let us know. We do our best to keep them up-to-date.

Government Funding

Funding is a vital part of government assistance. But it can be confusing to differentiate where the money comes from (the feds and/or the state), how much you might expect based on your program structure (residential vs. day) and the needs of your community members, as well as how the funds can be used. Some basic guidelines from High Spirit’s experience in Massachusetts are outlined in the Resources tab of this website.

The bottom line: government funds typically support a barebones operation and not much more. All capital costs, professional development, health insurance, other employment benefits (i.e., pensions, etc.) and the like, must be raised from foundations, individuals, or other non-government sources. It will all depend upon your needs.

Agencies

Some states, like Massachusetts, where Bob and Ginny started High Spirit, require privately run programs to contract with a state-sponsored agent or agency (typically for an annual fee). In return, the agent ensures programs are fully compliant with all relevant state regulations. Agents often administer a number of their own sites as well as those of others. The clip below discusses how this has worked at High Spirit.

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how do you actually plan this?

Creating a vision is just a start. Now is the time to turn your ideas into reality with a detailed plan for building, operating, and governing your new effort – the equivalent of a business plan for commercial ventures.

It would be wonderful to think that you might create a plan and build out a program single-handedly. But not only would that be next to impossible given the workload, it would fly in the face of the fundamental belief in community that permeates every aspect of your vision. You are a community enterprise, in every aspect of your operations, in every action and activity you undertake – including developing the blueprint for success. Listen to how Bob and Ginny experienced this at High Spirit.

Creating a vision and/or mission is just a start. To turn your community dream into reality you need a plan for building, operating, and governing your new effort – a blueprint of sorts – and a small team of like-minded co-founders to get there. Some of the basics you might include are:

· • Facilities/Physical Plant (especially important for residential communities)

· • Leadership (Executive Director and Board)

· • Staffing

· • Program Development

· • Fundraising

· • Marketing/Communications.

Listen to how Bob and Ginny experienced this at High Spirit:

Blue Print

For more guidance on creating a plan, including a more complete checklist of “should do’s” and a video of the Swain’s reflections on assembling a founding team, check out the “Resources” section