Breaking Ground 93 - A Tool for Helping People Have Good Livesby Ned Andrew Solomon, Director of Partners in Policymaking™ Leadership Institute, Council on Developmental Disabilities
“All people have the right to live, love, work, play and pursue their dreams in the community,” said Michelle (“Sheli”) Reynolds of the University of Missouri, Kansas City Institute for Human Development.
And it’s absolutely true. But, as those of us who live with disabilities or are family members of people with disabilities know, having that right and enjoying the benefits of that right can be two very different things.
Instead, individuals with disabilities and their families often feel isolated from the community, and too few get to live a well-balanced life where they might come into contact with others, which might lead to friendships, romantic relationships, cultural enrichment or employment opportunities.
For those fortunate enough to have long-term disability services – about 25% of the national number of individuals with developmental disabilities – sometimes those services can actually cut people off from the community if providers aren’t intentional in providing opportunities for true community participation. How many people with disabilities do we know whose closest relationships are with a paid caregiver, instead of with someone who truly chooses to be in their lives, with no strings attached?
On most days I get up and share a coffee with my wife. Then I drive downtown to an office of seven other people – who I have known for years – in an office building that holds hundreds of people from different agencies. I say hello and have quick conversations with maybe 25 of them each day – and through those brief chats learn about books read, movies seen, unique foods eaten, community events and activities that I may not have heard about.
On the way to work I may stop for a second cup of coffee and have a lovely interaction with the barista behind the counter, or the person standing next to me in line. These encounters happen all day long – on lunch breaks, cashing a check at the bank, stopping for gas or by a grocery or convenience store on the way home. As a presenter for our Partners in Policymaking Leadership Institute once said, “I don’t announce, ‘honey, I am going into the community now!’” I am already part of the community. So how can we help people with disabilities have good lives, with satisfying and meaningful engagement with the world around them?
The Integrated Supports Star is a good tool to help us think about moving closer to the life that most of us want. The Supports Star encourages all of us to think about the various strategies and places where we can find the supports that we need to achieve the goals we have for ourselves and our families. Far too often, families can feel stuck when they aren’t able to access “formal” services and supports for a family member with a disability – the Supports Star is a tool for problem solving, strategizing and brainstorming for where we can find or intentionally develop supports to help us lead the lives we want, in addition to government services someone may be eligible for because of their disability, age, or income.
Let’s begin this “Supports Star” exercise with the notion of “independence”. I do trainings for youth with disabilities where I talk about the need to “be more independent”, to have greater control of your life. But as much as I talk about “living independently” it really is a misnomer. Very few of us actually live “independently”. We all rely on others to help us accomplish important asks in our lives. I rely on my wife to fix things around the house; she relies on me to cook most of our family meals. I rely on my teenage kids to teach me how to use my cell phone. When my car breaks down, I call Kwame at the car dealership.
We all use resources and supports to get through our daily routines. We also use our personal skills and talents to help others get through their daily lives. Which brings us to the first section of the Integrated Supports Star: Personal Assets and Strengths. Personal assets and strengths are those things that a person or a family can contribute to society and that can help them pursue goals that are important to them. What do you do well or have a great passion for that might be beneficial to someone else, or even an employer? What are those aspects of your personality that make people want to engage with you? Are there strengths you have, skills you could learn or resources your family brings to the table that could help you move towards your goals? This is an opportunity for you to brag on yourself, so don’t hold back! Starting with mapping out the strengths, assets and resources we have or that we could develop is an encouraging and empowering place to start when thinking about how to move closer to the life we want.
Moving along the points of the Star, Relationship-Based Supports are those things that the people closest to you – like family, friends or neighbors, co-workers or people who are members of your faith community – might be able to help with. Who’s a part of your life, and what resources and supports can they bring to your life? Is your neighbor across the street good at building things? Could your co-worker drive you home a couple of days a week? Didn’t your friend at church say he was looking for seasonal help at his bookstore – and wait – didn’t you say you love to read? All of us rely on others for support – the “relationship-based supports” part of the Supports Star reminds us that there may be people in our lives or our family’s life that could help us in moving closer towards achieving our employment, independent living or education goals. In exchange, how can we offer supports to others, using our strengths and assets? If a person doesn’t have family or friends or neighbors that can provide some support in living their version of a good life – how can we begin to develop more opportunities for someone to build those types of reciprocal relationships?
Let’s move on to Technology, which has become omnipresent in our lives. Think about your specific needs, and then brainstorm about a piece of technology that might help satisfy that need. Too often, when we think about technology to support people with disabilities, we may think about highly specialized assistive technology or apps designed specifically for users with disabilities – but all of us use technology in all sorts of ways to connect with others, learn new information, meet our needs and get through our day more effectively. Maybe you have trouble being and staying organized. Can you set reminders or tasks on your cell phone that will alert you when things need to be done? Does your inability to read or see medicine labels make you dependent on someone to give you your meds? What if you had a pill dispenser that alerted you when it was time to take a pill, and then automatically only dispenses the prescribed amount? What home access technology could you have that turns on and off lights, changes or sets temperatures or opens and closes the door to your home?
Community-Based Supports is another point on our Supports Star. These are the supports that anybody can take advantage of, like public parks, public transportation, recreation centers, libraries, hospitals or free clinics. It might be helpful to make a list of these entities that your community offers, and then check out their websites or get on their mailing lists so you don’t miss beneficial offerings or special events. The library is offering a cooking class; the park is having a free classical concert; the local rec center is teaching a self-defense class; your local American Job Center is teaching classes on interview skills. Get with the program and connect up with your community! We sometimes can overlook or forget all the resources available through our community that can help support us in leading good lives and work towards achieving our goals.
The last point of the Star is Eligibility-Specific Supports. These are the services or resources that a person is eligible to access based on their disability, age, income, geographical location or other criteria. An example of these types of supports could be home- and community-based services through a Medicaid waiver for people with disabilities, food stamps, special education services, Vocational Rehabilitation or Section 8 housing vouchers. If you live in one of Tennessee’s big metropolitan areas, there may be quite a few of these resources nearby. If you live in a more rural area, you might have difficulty accessing a particular service, even if you are eligible. Too often, this is the point of the Star that most people think of first when trying to find supports for an individual or family that experiences a disability.
In fact, Eligibility-Specific Supports may be the ONLY point of the Star that people consider. Which is the point of this exercise. All of us need to build an “infrastructure” of integrated supports that work together – we are short-changing people with disabilities if we only consider formal government services as the way to help someone achieve their goals. Beyond the fact that these types of government services are limited in their capacity to serve all eligible individuals, truly supporting individuals with disabilities to live good lives in their communities means helping people access all types of different supports, the same way that all of us rely on various strategies, resources and relationships. We don’t want to “put all of our eggs in the one basket” of eligibility-based supports – to lead full, rich lives, people need to find and develop supports in all “parts of the Star” when they can.
We have to widen the lens to make sure we think about ALL the options at our disposal that will lead us toward the life we want to live. What combination of Personal Assets and Strengths, Technology, Relationship-Based Supports, Community-Based Supports and Eligibility-Based Supports will help us have the lives we want, with meaningful activities and relationships to fill our days?
So, take a few minutes and fill out your own Integrated Supports Star, or help someone you know and love fill it out about their life. You can download a clean copy of it at the website lifecoursetools.com. Reminder – this isn’t meant to be a tool filled out just once; the Supports Star helps us problem solve, brainstorm and strategize any time someone needs support with any area of life. I think it’s a great tool to at least start the conversation.
If you have any questions about how to use the Integrated Supports Star, please feel free to contact me, Ned Andrew Solomon at firstname.lastname@example.org or 615.532.6556, or Emma Shouse Garton at email@example.com or 615.253.5368.