Helping People Organize Their Supports: Alternatives

I was fascinated by a remark by an expert in person centred services for people with intellectual disabilities, that went something like, “There are about nine organizations around North America doing really good work that puts people with disabilities first, and each of them depends on one or two strong leaders and government support – any part of which might be at risk at any time.”   When I went back later to ask him about it, he said something like, “Actually there might be as many as fifteen.”   I thought it might be interesting to start listing them here for people who want to investigate them – every single one of them has been glad to talk about what they do, and happy to entertain the idea of visits.  This isn’t an exhaustive list, but just a taste.

For those who are happy with group models, there are many organizations that provide these and the methods are relatively clear after a half century.   Often families and individuals, however, are told that no other options are available to them,  or that only the next favourite model of the day is possible – which might not be what they’re looking for (for example, home sharing – check out Susan’s article).   However, it is not that other options don’t exist and some of them have been operating successfully for decades as well.

Recently, a couple of unrelated individuals asked for assistance in mapping out an advocacy strategy that would allow them to control their own staff, after years of not having input into who they worked with in two rather large organizations.   We sat and made notes about what they would ask for, and it all seemed quite reasonable but both came out of their individual “person centred planning” meetings having been told that a) there are no other options for them and b) their funded hours were part of global contracts that could not be broken up.   Another friend who mapped out his own very beautiful person centred plan with his support network, to present to his agency at his individualised planning meeting, came back with a plan designed by (and for) the agency, which said things like, “X has given input into staffing that will be directed to HR and an appropriate staff will be chosen for him and monitored by his program supervisor.”   What he’d asked for was input into hiring, to attend interviews, and to be part of evaluations.   In any of the organizations listed here, none of this would have even been a conversation – the assumption would be that any of the three of them would be as involved as possible in all decisions about their lives.

One way to figure out how to do a great job of being person-centred, is to look at what others are doing well, so I’ve been trying to track organizations recommended by a number of people that might interest those looking for models of how to help people to organize their supports*.   I haven’t visited all these organizations but I’d like to.   I have talked to most of them, and to people who are assisted to organize their supports, and to their families and staff, and their feedback has been congruent with their organizational missions.   That none of these options exist locally doesn’t mean that none of them could – often these initiatives are started by one parent or a few people who want something different.   Here are five that offer interesting alternatives to larger organizations focused on congregate care and group living options.

I was hoping to meet someone from Georgia Options on a recent trip to Atlanta, but didn’t make the space for it unfortunately.  I love their website – it’s clear and articulate:  “Georgia Options, a grassroots non-profit organization started by a small group of family members, people with disabilities, and other citizens, began offering supports to five people in 1992. These five people and their families began to experience a new freedom and independence.”  “Georgia Options is unique in that we attach services to individuals rather than to places. We support people in choosing where they want to live, with whom they want to live, and how they want to live. All of the people we serve live in their own homes. Some of the people we serve receive support 24/7/365, some 8-12 hours per day, and others just 20 hours a week. We strive to provide 1:1 support as much as possible, allowing each person the opportunity to pursue his or her hopes and dreams, to be active in the community, and to live the best life possible.”  I particularly like this sensitive and inspirational article by founder and parent Mary Kissel.

Living in Friendship Everyday, Inc….. mostly called LIFE  and In The Company of Friends are related organizations in Manitoba:  “In The Company of Friends (ICOF) is a funding model offered by Manitoba Family Services and Consumer Affairs to Manitobans with intellectual disabilities.  People who choose this option want to self-direct and manage their own lives each day with help from friends and family, instead of receiving residential and/or day services from an agency.”   The focal person works with their support network to manage their supports.    To assist in forming and sustaining their support network, focal people can access In The Company of Life Everyday Inc., which provides “resources, training, information and case management to individuals receiving ICOF funding.  The Department of Family Services and Consumer Affairs contracts LIFE to ensure each person has a strong and functioning Support Network that supports his/her desires and autonomy.  LIFE is responsible for ensuring that the integrity of the model is upheld at all times.”

Neighbours, Inc. in New Jersey is run by C.E.O. Patti Scott and “is an innovative non-profit organization created specifically to support people with disabilities and their families in choosing and designing a life for themselves within their local towns and neighborhoods” by focusing on networks of support, citizenship values, and fostering social roles which allow focal persons to be perceived as people sharing gifts.    An interesting part of this organization is that it is really a network of smaller organizations each dedicated to slightly different purposes.   The belief of their board of directors is that organizations that become too large to know all of the players lose their ability to focus on individuals.   Neighbours Inc. also has an active publishing arm which creates and provides supports to folks, such as The Listening Book, “A workbook that serves as a guide for conversations with people who are seeking to have more control in directing their own lives. The workbook covers topics such as important relationships and networks, personal interests, living arrangements, employment and income, health and support needs, backup plans, budgeting, and more. The format serves as a valuable resource for planning as it acts as a reference point to reflect back on, and collects information that can be used in more formal plans.”  Often organizations such as these publish or print their own “text books” because they are creating new infrastructures as they need them.

Onondaga Community Living is the creation of a far-thinking board of directors and Executive Director Pat Fratengelo.   We were lucky enough to spend time with Pat, board members, staff, leaders, folks supported, evaluators and academics during a week long visit there at the beginning of the year which led to this article.   A striking thing about Onondaga is simply the intelligence of its perspectives and how they think critically about what they do.   On the front page of their site is a link to this article by Dr Michael Kendrick about agencies focused on transformation, which speaks to many of the ideas embedded in these organizations.

Total Living Concept, known as TLC, is in Kent, Washington, and negotiates its way through a whole different U.S. funding and compliance system than anything we have in Canada.   While some of these organizations simply began with a different idea, others went through interesting transformations, in this case led by long time advocates Lyle and Mary Romer:  “In the beginning, TLC only operated group homes, which provided congregated living options for people with developmental disabilities. Through the process of constant self-evaluation and listening to the people being supported, TLC gradually moved away from congregated housing options to providing individualized support enabling each person to live in their own home. The state refers to this as Supported Living. Many people choose to reduce their living expenses by sharing their homes with housemates who do not receive services from TLC, but rather are members of our general community. TLC is very proud to support people to live where they want, with whom they want, for as long as they want, according to their own personal lifestyle choices.”

If you know of other organizations that you’d like to see included in this list, please let me know at aaron@spectrumsociety.org   I’ll try to keep updating it under the tag “support alternatives.”  If you visit or if your supports are organized by any of these folks, find out who best you could send some positive feedback to – government funders need to know that alternatives to traditional models are supported.

*I’d like to thank Dr Lyle Romer for this phrase “helping people to organize their supports” because, as he explained it to me when he corrected my use of “we support people,” it began for me to encapsulate a difference in attitudes around authentic person-centredness, which focus on the actual and potential leadership of the person with the disability, and what passes for person centredness, referring to agencies that rush to get all their person centred plans done to meet some external deadline (accreditation, government, policy) rather than take a stand for personalism as a philosophical stance.   There are some great essays online about Wolfensberger and the idea of personalism, which essentially is the philosophy that the person is the *most* important factor – whereas often decisions are made which have to do with finances, staff needs, unions, agency protocols, government driven projects, or available models.   Instead, a personalist approach begins and ends with the choices of the individual.