Employed in a standard workshop, Linda* built small standardized tools. Throughout her days, Linda managed some behavioral challenges. She experienced occasional outbursts of emotion, causing disruptions in the workplace. To the supervisors and coaches at this agency, it wasn’t always clear what was causing Linda’s behavior. They knew something was getting in the way of her happiness and success.
Over the course of the past two years, the agency that employs Linda invested in rethinking their organizational philosophy. Taking steps to become a “person-centered” agency, Linda’s support team has seen some remarkable changes in her behavior.
Stepping Toward Person-Centered Planning
Two years ago, Independent Futures partnered with an agency on the west side of Chicago. One of our tutors, Rob Larson, initially trained our new partner on what it meant to provide person-centered service.
Exploring person-centered philosophy, Rob explained our Full Life Model and how we work alongside individuals with disabilities to achieve their hopes and dreams. For many years, the agency employed a majority of their participants in their on-site workshop but realized that job didn’t work for everybody.
With the Full Life Model and My Full Life online software, this agency began the hard work of altering their organizational culture. Planting the seed for innovation and creative thinking, Rob’s training already leads to big changes.
A New Kind of Support
Jake Rohde, a training consultant and tutor, visited the agency late this summer. Whereas Rob taught the organization about our philosophy, now Jake would work to help implement the My Full Life tool.
We have been a small nonprofit agency since 2002, while our new partner serves more than 300 individuals with disabilities. Founded in the mid-twentieth century, this partner’s leaders saw the change to person-centered philosophy as a difficult step. Jake explained, “Older agencies wonder, ‘How do you go from a structure where everyone is involved in one activity to something so individualized?’”
To do this, our partner agency has taken on meeting with and interviewing every adult they support about their desires. Moving past the fear that these changes brought, staff meets with each participant and asks, “What do you want to do?”
Recognizing the Impact of This Support
When the agency’s staff met with Linda, they offered her the opportunity to take some Montessori-style classes. Either instead of or in addition to the workshop, Linda could explore her interests and take a chance. She chose to take a couple of classes.
Since then, Linda’s behavior has changed dramatically. Like everyone does, she still may have difficult days. But at the end of most days, Linda visits her coaches and fellow participants with a calendar, marks off the day, and she eagerly tells each of them, “Today was a good day.”
In moments like these, the agency’s staff realizes that our person-centered approach works. Being able to see the tangible, long-term results of person-centered planning demonstrates to them that the hard work of individualized plans is worth their time.
Building On Person-Centered Philosophy
In 2022, new federal regulations will require that all agencies serving adults with disabilities employ person-centered approaches. For many large agencies like our partner, they have a fear that this approach will be too time-consuming and too difficult to implement on large scales. We know that this is not the easiest path and asks a lot of direct support workers, but the positive impact of person-centered philosophy is great.
Our partner’s next step is to continue interviewing their participants, building plans for each individual they serve. Jake will return to train the agency on using My Full Life as a goal-tracking and skill development tool.
When adults with disabilities are given opportunities to explore their interests and skills, they begin to feel more like themselves. Independent Futures is working to expand those opportunities so every individual with disabilities can say, “Today was a good day.”
For parents of adults with disabilities, the path to an independent future is never without obstacles. Planning for the future requires dozens of extra steps that parents of adults without disabilities may never encounter. From developing trusts to drafting letters of intent, protecting the future leaves so many questions to answer. Yet one question stands above many others: When should families begin to consider independent housing for their loved one?
The answer? As soon as possible.
Reasons To Start Planning Today
Planning for the future is not a linear process with each step laid out for families to follow. As time passes, systems change alongside changes in perception. In the past, families expected their loved one would continue to live with them or maybe in a group home.
While many people with disabilities have lived with their family and may continue to, there are several reasons why this option is not as feasible as it once was.
Relying on Family
Unlike in the past, adults with disabilities are outliving their parents. For the first time, parents may pass at 80 years old, but their adult child with disabilities might be only 60 – and very ready to live a full life. But now, without their parents, the individual lives without parental support and without their family home to go to.
Families often plan for their disabled son or daughter to live with a sibling, but data tells us that sometimes this doesn’t work out. 50% of siblings say they plan to co-reside with their sibling. Only 10% actually do. These stats don’t tell us why this happens. However, they do tell us that we shouldn’t completely rely on siblings to become caretakers once parents have passed.
Relying on Government Support
Most families of individuals with disabilities know that relying on the government for support isn’t reliable. Few know just how unreliable this option is.
Only 25% of individuals with disabilities receive any financial government supports. Of that small percentage, 71% receive SSI/SSDI benefits, 44% receive Medicaid waivers, and only 15% receive vocational rehabilitation support. So what does this mean?
It means that your loved one cannot necessarily depend on receiving financial support from the government to live in the community when you’re gone.
It means that you may be leaving your loved one without options.
It means that the time to start looking at independent living options is now.
The Benefits of Community Independent Living
When individuals with disabilities have the chance to live in small community settings, their quality of life increases. Living in this type of setting increases an individual’s access to not only family & friends but also to medical care, preventive care, and employment opportunities.
With better access to community assets, we see increased life satisfaction in almost every individual we work with. They are able to utilize self-determination skills while gaining new independent living skills like cooking and cleaning.
These benefits of independent living are not simply nice to have. They are the difference between a full life with personal supports or segregated loneliness.
Developing Crucial Personal Support Networks
One more benefit of living in community settings is the chance to develop personal support networks. These networks consist of natural supports, such as family and friends, plus potential employers, local business owners, or even a school crossing guard.
A personal support network consists of anyone in an individual’s community. Part of living independently is community acceptance – and small settings, like an apartment or shared home, often lead to greater acceptance from neighbors.
Finally, living in this type of small, community setting often leads to increased community life participation. This can look like being part of a book club, belonging to a church, or volunteering at the local YWCA.
Each of these increases to quality of life means that an individual’s personal support network is growing. Developing support networks early, before parents pass, means an individual with disabilities can move into the next stage of their life with greater comfort and stability.
Your Next Steps To Independent Futures
By now, you may be convinced that it is time to start planning for your loved one’s next home. After a few frustrating late night sessions with Google, you realize that finding community housing options for people with disabilities isn’t easy. After you have begun applying for or securing funding, what do you do next?
1. Build Support Networks
Once your loved one knows what type of community they want to live in, it is time to develop relationships. Before anyone moves and before making any commitments, explore opportunities to get involved. The best way to nurture a relationship is to start with connections.
Is there somewhere your loved one would like to volunteer? Perhaps they want to explore the new library branch? There are many ways to get involved in a community. The hardest part is to start.
2. Focus on Life Skills Development
Our Life Skills Tutors are part of our participants’ key to success. At each session, a tutor will help someone with anything from creating a budget to getting their exercise in. Our Full Life Model illustrates that each aspect of a full life is equally important to another. For example, we know that developing friendships is just as important as creating good nutritional habits.
What skills will they need in order to achieve their dream?
What skills does this individual already possess?
What has this person had a chance to learn?
What can an individual learn?
What supports does an individual need?
After talking about these questions, start thinking about how you or a personal support worker can help. Some lesson plans exist to help individual with disabilities learn how to do, rather than how we can “do for” them.
3. Research Existing Options
Return to your original Google search. The options that exist may not be the perfect Cinderella fit for your loved one. However, the people or organizations that created them may be able to give you a road map to creating your own solution.
The first step to learning more about existing options is to visit several existing options. Begin talking to other families who have stood where you are standing today. There is strength in numbers, such as shared experiences and knowledge.
While you are visiting existing housing options for people with disabilities, you will see what an individual’s independent life can look like. Ask your loved one, “If we created our own option, what would you want?” Does that vision include a roommate? A communal space? These are the types of questions to answer before you start building.
The Perfect Storm Is Now
Today individuals with disabilities are included in more opportunities of a full life than ever before. From the time they enter school, there is typically some form of integrated classroom time. When leaving integrated school settings, families and individuals are beginning to demand inclusive options for the future. Whether in the form of community inclusion or employment, it is no longer optional to create inclusive spaces.
Yet, upon leaving school settings, many housing options are not integrated or independent. Though research argues that small community-integrated settings improve quality of life, many existing housing options for people with disabilities are large settings or removed from the community.
Ultimately, families seeking greater inclusion created a large number of the small community settings that exist. Those options have not been available without hard work, dedication, and commitment to independence. If your loved one hopes to live independently someday, the time to start looking at innovative housing options is as soon as possible.
Learning self-advocacy means developing a set of skills that are based on self-knowledge, communicating your understanding, and knowing your rights. When educators teach self-advocacy skills to students with disabilities, that knowledge opens doors to success that might otherwise never have appeared.
Unfortunately, students with disabilities historically have not been included in learning intangible skills such as the development of leadership abilities. To develop a skill set of self-advocacy tools, dive into cognitive functions like goal setting, intrapersonal functions such as building confidence, and interpersonal functions like collaborating on teams. Teachers seeking to support all their students, including those with disabilities, can read more from the National Council on Learning Disabilities to understand how to implement self-advocacy skill curriculum to your classes.
Develop Self-Awareness Through Skills Assessment
Begin by understanding the students’ strengths and weaknesses. Teachers can conduct a skills assessment, and then they should try to focus on the strengths. Starting with strengths helps students refrain from internalizing low expectations. With a solid understanding of their talents, students will leave class with greater self-awareness.
Making Skill Development A Priority
The next step sounds simple: make teaching self-advocacy skills a critical priority. But this step is like the foundation of a house. It will require a deep dive into lesson plans, adding opportunities for students to express their needs and desires. Without baking these ideas into the classroom’s curriculum, students most likely will not succeed in advocating for themselves.
Flexible Classrooms Teach Self-Advocacy Skills
Teachers who want to support students in upholding their rights should try to create learning activities that engage all of their students on this topic. Some schools are beginning to move toward Universal Design for Learning, or UDL. UDL allows teachers to accommodate individual learning preferences, while also guiding the development of flexible classrooms.
Finding Real Opportunities to Learn
Finally, schools that support this skill development should consider ways to make learning this skill tangible. Because self-advocacy is not easily measured, learning experiences that are collaborative and engaging will help gauge students’ capacities. Schools could begin making connections with local businesses to see what opportunities students could have in the community. Through learning collaborations in the community, students gain real-world experience, and most will transition out of school ready to succeed.
How We Can Help Educators & Agencies
Teaching current students how to advocate for themselves is obviously crucial to their post-school success. But what about adults with disabilities who weren’t taught self-advocacy skills in school? My Full Life™ can help. An online learning management system, My Full Life consists of three parts: a skills assessment, planning process, and skills curriculum.
Agencies that serve adults with disabilities can request a free demo of My Full Life today! This offer is also available to educators teaching transition skills to students with disabilities. Reach out today to learn more!