This blog was written by our community partner Michael Walther of Oak Wealth Advisors. As experts in special needs planning, the people at Oak Wealth Advisors can provide your family with the support you need to put your future in order.
Families of loved ones with special needs face greater challenges with future planning than other families do. In Oak Wealth Advisors’ experience working with families of loved ones with special needs, we have been able to identify a number of traits that separate those who are more successful than the others.
5 Keys To Future Planning Success
Families who have been the most successful with their future planning have the following things in common:
1. They are always working on their planning. It is a journey, not an event. Planning must be an ongoing active process.
Know Your Network
2. They have fiduciary advisors assisting them. Fiduciary advisors are required by law to put their clients’ interests ahead of their own. Insurance agents, stock brokers and others who may call themselves financial advisors, but who will not put their status as a fiduciary advisor in writing, should be approached with caution. These non-fiduciaries get compensated for selling products like insurance policies and annuities and have conflicts of interest that will likely harm your planning.
3. Successful families cast a wide net. Having a trusted network and being actively engaged in the special needs community allows them to learn of opportunities before others. It also enables them to find answers to new issues more easily when they arise.
Documentation and Communication
4. They document their planning. Estate planning documents such as wills, trusts, and powers of attorney are essential written documents. Care guides and letters of intent are not legal documents but are nonetheless also valuable documents due to the information they contain.
5. They communicate their future planning. There are two benefits to letting other family members know what planning is in place and what is contemplated for the future. This allows people to learn that they have been named to serve in some capacity in the future. This allows them to ask questions and understand what is expected and also to decline to serve if they do not believe they will be able to meet the expectations of the family.
By learning that a future member of the planning team for a loved one is not interested in the role, the family has time to identify and implement other people for the needed roles. Communication also avoids unexpected generosity that negatively impacts the planning that is done. In summary, the more your extended family knows, the smoother the implementation of your planning will be.
Tools For Success
As you likely noticed, these actions have no financial cost, but they do require timing and thought. We hope all families will focus on these things to improve their long-term planning success.
The 2020 election is just under 60 days away. This year, we have all seen opportunities for civic engagement rise. Now you have the chance to choose your elected officials up and down the ballot this fall.
Our elected officials represent us. Part of their job is to address the issues we think are most important. Even our elected officials can’t be experts in everything though.
That’s why it is so important to contact the elected officials who represent you! Sometimes our representatives need us to explain why something is troubling us, and sometimes we need to tell them why we support certain issues.
With so many ways to connect these days, it’s never been easier to make your voice heard. First, we will cover some resources for Illinois residents, and then we will include national resources to help our national community get involved.
Advocacy Resources for Illinois Residents
If you live in Illinois, you can find your elected officials by searching your address at the Illinois State Board of Elections website. When you enter your address, the site will show your elected officials and their contact information. With that information, you can reach out directly and share your hopes and dreams for the future.
For local Chicagoland folks, WBEZ wants to know what you care about. They’re asking listeners to share, “What do you want your Illinois elected officials to be talking about this election season?”
Fill out WBEZ’s brief survey to share which issues are most important to you. What do you wish your representatives knew? Do you want them to change something? Tell them how today!
Illinois Housing Blueprint
Folks in the disability community know how difficult it can be to find housing that is both accessible and affordable. This survey from the Illinois Housing Blueprint will help them understand community needs in Illinois. Fill out their survey to share your experience with community and housing.
National Advocacy Resources
If you don’t live in Illinois, you won’t find your elected officials on the Illinois State Board of Elections site. Instead, you can visit CommonCause.org to look up your elected officials. Knowing who your elected officials are will help you learn what they stand for – then you can tell them what you need! Contacting your representatives is great for national, state, and local city council issues too.
Other places to look for support in advocating for your needs include state chapters of national organizations like the The Arc, TASH, and more. Each of these organizations should have a page explaining the policies they advocate and how you can get involved!
Using Your Power
While it is crucial to use your vote in every election, our civic duties do not end there. It’s just as important to establish a habit of reaching out to your elected officials about changes you want to see. By contributing to a citizens agenda campaign, you can start exercising your voice beyond the vote now by getting involved! Click on any of the links in this blog to get started.
Politics is a highly contentious and often unforgiving arena, so it takes a great deal of grit, courage, and energy to pursue a political career. It also demands no small amount of resources, and it is for this reason that so many ethnic, minority, and marginalized groups are so noticeably under-represented. Among these are people with disabilities, which is a real shame as this is one group that needs to be represented in political offices.
Thankfully, the tide has been changing, and we have seen more and more candidates with disabilities throwing their proverbial hats into the ring of late. Indeed, if you’re a person with a disability who is planning to seek a political position, the potential for doing a load of good by representing your fellows is great — not to mention, worthy of the challenges that you are bound to face (of which there will be plenty). Here are a few things you must remember as you get ready to go into the political sphere.
Choose to Have the Best People in Your Camp
At the core of every successful political campaign is a corps of staffers. This is basically a well-oiled machine made up of both volunteers and paid individuals that, simply put, gets things done. Your campaign staff will take care of everything from fundraising to research, voter canvassing to scheduling appearances and appointments — the list can go on and on. And because each element of your campaign is essential, you want to be certain that you have the most efficient and most effective individuals in your camp, as well as the most trustworthy.
Among the people you will need in your campaign is an email marketing consultant. Such a professional is especially important in this day and age when even political campaigns have gone digital. You will need someone who knows how to reach and engage voters through targeted emails. Thankfully, there are online job boards where you can find email marketing specialists with the experience and expertise to handle such a critical function of your campaign.
Put Yourself Through Boot Camp
As a political candidate, you undoubtedly have a lot riding on your shoulders. In fact, you are essentially seeking to represent people who, like you, are constantly facing challenges because of complex policies surrounding disabilities. Running for office is a huge responsibility, which is why you also want to make sure that you are the best possible candidate for the job.
Thankfully, there are various organizations that recognize the need for more disability representation in politics. For this reason, they are encouraging more people with disabilities to run for office by providing valuable training in politically-crucial skills like public speaking, policy-making, fundraising, and so much more. It’s a good idea to consider going through such training — not only so you can be the best representative you can be, but also so you’re better equipped to handle the many challenges you will face as you run for office.
Gear Up for a Good Fight
And speaking of challenges, it’s wise to also have a clear idea of what you will be up against as a person with a disability running for public office. Many of these challenges will be related to the stigma of disability, which you certainly aren’t new to. Sad to say, there is still the stereotype of disabilities being weaknesses, which political opponents are likely to exploit and use to their advantage. However, as long as you are well-prepared, know your policies inside and out, and are truly passionate about what you’re representing, then you’re better able to stand your ground.
Indeed, politics is not for the faint of heart, and giving it a shot as a person with a disability can be double the challenge. But with adequate preparation, sufficient support, and your heart in the right place, there’s no reason why you won’t triumph. You can contribute to making the world better for people with disabilities.
At Independent Futures, our mission is to help craft a world where every individual has access to all opportunities of a full life. Our mission is to support people with disabilities, but we must condemn racism in all its forms. We are committed to expanding access to our supports and programs as much as we possibly can.
Rather than release a statement talking about what we have done as an organization, we want to highlight the voices of our staff. At least ¾ of our staff have attended the Beyond Diversity workshops sponsored by Evanston Cradle to Career, and those staff members created a DEI working group that finds new ways to expand access to our programs. Our staff members are conscious of how the personal is political, so we asked them to share how race affects their life and work. These are their responses:
Ann Sickon, Executive Director
I believe that societal change only comes when each person recognizes they have a role to play in making needed changes in our reality. Policies, regulations, and federal and state laws, though perhaps well intentioned, can be subverted and destructive when our citizens do not demand equal protection under the law for everyone.
Still, these demands alone are not enough. We must expand our awareness of current policies and rules, and then we must root out discriminatory racial practices. We each have the responsibility to identify ways to create fair and equitable employment opportunities and opportunities for every voice and persuasion to be heard. Everyone must have the opportunity to live their fullest life.
Kathy Lyons, Director of New Futures Initiative Training & Consultation
I believe that there are no spectators in the fight against racism. Either we are actively working to dismantle racism, or we are perpetuating it. In our work, we can make systemic change – eradicating racism in our educational institutions, health care systems, economic systems, housing systems, and justice system. Taking action means:
Learning, listening, and leveling what has never been an even playing field
Thinking about who’s at the table, in the room, and who never got into the building
Sharing, or giving up, your seat at the table
Filling the room with voices different from yours and then doing what those different voices demand
Recognizing the contributions and sacrifices of those who actually built the buildings
Seeing our common humanity and standing up when others do not
Rob Larson, Community Life Coordinator & Life Skills Tutor
I’m inspired to work at Independent Futures because it’s a visionary model where people with disabilities and their families have the opportunity to explore life in the context of dignity and community. Even visionary models need to face very real obstacles when building community and systemic racism is one of those.
I learned about Evanston’s history with systemic racism. I also learned that it was hard for some Evanston families to afford our services due to the lack of funding in Illinois and many of these families were people of color. I felt like we were missing out on the vibrant gifts of many Black, Asian and Hispanic families. I’m refreshed when I remember that we belong to one another. Independent Futures has created some free activities and a scholarship fund to remove some barriers. We still have a long way to go, but as other states have embrace funding community inclusion, why should Illinois families be robbed of that opportunity?
Regarding race, gender and sexual orientation, I’m a straight white male. By outward markers it is clear that I benefit from a confluence of power, especially white patriarchal privilege. I held some toxic views and didn’t even realize it. It’s been life giving to struggle toward love and liberation together, with all sorts of people from all walks of life. In the process, I made surprising friendships and was freed from the toxic views which were robbing me of joy.
I look forward to being with you and learning from you. I am eager to dismantle oppressive systems and create opportunities for families to thrive. I have faith that people will flourish wherever love is planted and justice is watered. I’m looking forward to walking in that garden with y’all.
Connor Larsen, Communications & Marketing Manager
My relationship with race and social justice issues is constant and it is personal. At work and at home, I continue to educate myself on others’ experiences while participating in active & progressive citizenship. Some of the ways I practice active citizenship include:
contacting my government representatives,
reading policy proposals,
supporting candidates I believe in through donations and volunteering,
voting in every election, even local primaries.
In each of these actions, I am using my power and often my privileges to move the people around me – and those who represent me – toward a more just and equitable future. In doing this work, I offer an open invitation to anyone who would like to learn more and join in!
Sharon Purdy, School & Agency Consultant
My hope is that Independent Futures can someday provide equal opportunities for inclusion for all people with disabilities in Evanston. Unfortunately, Independent Futures’ supportive and effective programming is not affordable to many in our community.
Currently, many of the students and families whose transition planning we support through Evanston Township High School do not have access to person-centered programs such as ours upon graduation. I hope that we will continue to expand the after school activities that we have been able to provide through generous grants and professional commitment. I also hope we will continue to develop an environment where everyone can flourish.
Our participation in Courageous Conversations has opened important dialogue among our staff. I’m proud that we have been intentional about learning from each other. Let’s share these conversations with our whole community. I read this on a yard sign yesterday: I pledge to speak out against actions and systems of oppression that have an unjust racial impact. I also pledge to continue to learn from the young adults in our community with an open heart and action.
Amy Fox, Director of My Full Life Training & Consultation
At a most basic level, if we assume that we all have a social responsibility to one another, then our job as a society is to help one another. We must honor our social contract to access this greater good and it may require surrendering something for the greater good.
This implicit bias training came up in a news piece yesterday. It is broken out into a variety of categories on implicit bias including race, sexuality, and disability. It is our duty to know where our own biases are and work to consciously correct them.
Finally, this poem by Langston Hughes gives me pause for reflection on a dream deferred.
“Harlem” by Langston Hughes
What happens to a dream deferred? Does it dry up like a raisin in the sun? Or fester like a sore— And then run? Does it stink like rotten meat? Or crust and sugar over— like a syrupy sweet?
The next chance to vote in Illinois is on Tuesday, November 3rd, 2020. During this election, Illinois citizens will vote for a new president, choose our senators, and answer important questions all through their powerful ballots.
There are several steps to preparing for an election, like we outlined in our primary voting blog back in February featuring information about primaries, registering to vote, and how to vote. While our primary voting guide has important information, a few things have changed since then!
Steps To Vote In Illinois
First, make sure you are registered to vote. You can check your registration at this link. If you have moved or changed your name recently, you will need to re-register. You can register to vote online until October 18th.
Next, you can decide whether you want to vote in-person during early voting, in-person on Election Day, or by mail. Early voting information can be found on this State of Illinois website.
However, due to COVID-19, the safest way to vote this year is by mail. In order to vote by mail in Illinois, you will need to visit this website to request your ballot. When you fill out this form, you will be asked if you need a military/overseas ballot or a standard vote by mail application. If you choose the standard application, you will then choose your “jurisdiction,” meaning where you live.
Next, you may be directed to another website that is specific to your location. Read and follow all of the directions on the website pages, and write down any important dates on a calendar. If you submit your vote by mail application by September 24th, you will receive your ballot by October 5th. Remember: If you vote by mail, your ballot must be returned in the mail on or before November 3rd.
Once you have submitted your information, like your address, the site will redirect you to a confirmation page. This page is important because the page will tell you if your application was successfully submitted!
Being A Smart and Prepared Voter
Now that you have checked your voter registration and requested your vote by mail ballot, it’s time to learn about the candidates.
One of our favorite tools is BallotReady.org. On this website you can enter your voting address, and the site will break your ballot into each race. It will then give you the opportunity to click on a candidate’s name to learn more about them and their positions. When you make a decision about a race, you select the candidate you want, and BallotReady will save your choice. When you’re ready to cast your ballot, you can use this site to pick the candidates you believe in most.
Don’t forget about the AAPD’s Voter Resource Center! These resources are helpful to people with disabilities because they collect information about candidates specific to disability issues.
Are You Ready To Vote In Illinois?
Does it feel early to get ready for an election in November? We understand that it might. Before COVID-19, many of us could wait until the week before Election Day to start preparing to vote.
To guarantee that you are able to vote this year, start getting ready today. Check your voter registration status and request your vote by mail ballot by August, and then use the time between then and late October to make educated decisions about who represents your interests the best.
Teaching life skills to adults with disabilities is the main responsibility of our life skills tutors. Before the COVID-19 pandemic led us to close our office doors temporarily, a tutor’s daily life varied widely. One day, a tutor would meet with one participant in the office to go over budgets, and the next day they might meet at the McGaw YMCA to support healthy living goals.
Because of our person-centered philosophy, our tutors’ experiences are different with each participant. Each individual determines their own goals based on their hopes and dreams. After that, tutors work with the individual to create action plans, which are the basis for tutoring sessions. These individualized plans mean that tutors are usually out in the community, supporting local cafes and shops while teaching life skills to our participants.
The pandemic disrupted much of the work we do at Independent Futures, but our Direct Support team pivoted quickly. With many local businesses closed and a stay-at-home order, our tutors needed to start teaching life skills remotely.
Teaching Life Skills To Adults During A Pandemic
Three months into our stay-at-home order, tutoring looks a lot different than it used to. “Tutoring during the pandemic has evolved,” reported life skills tutor Dee Dee Goldman. “Much of what I do is teaching and modeling, so the physical distance has changed that.”
Another tutor, Cynthia Witherspoon, said, “During the first week Independent Futures instituted the work from home policy I met with the participants I tutor using texts, FaceTime, and phone calls.” However, as the governor modified the stay-at-home order, “I returned to meeting in person with most of my participants in their homes. We practice safe distancing and I always wear a mask. For those who have not felt comfortable returning to face to face meetings, I stay in touch with FaceTime or phone calls.”
Turning Challenges Into Opportunities
Working and tutoring remotely meant new challenges for tutors and participants. The first step was figuring out how sessions could continue. Dee Dee shared, “We have been very creative by using screen share, dictation, and new forms of learning to do daily tasks.”
Because tutors are teaching life skills to adults with disabilities using new tools, the topics individuals are learning have changed too. The challenges associated with teaching someone how to cook, combined with adapting to remote learning, meant tutoring topics changed too.
During Cynthia’s tutoring sessions, she and participants have gone for walks to change their scenery. She also used the pandemic as an opportunity to discuss, model, and practice safety through personal hygiene routines. But the need for distance learning with life skills led to new technology challenges.
“One learning opportunity was understanding how to order groceries online,” Cynthia said. “It is surprising how many things need to be considered, like choosing which store you want, using a debit or credit card to pay for groceries, and scheduling time to have groceries delivered. It’s a complex process with a lot of steps to learn.”
Adjusting To A New Normal
Many of our participants work in grocery stores and remained working as essential employees throughout the pandemic. Still, some participants felt their anxiety increase. For participants who were furloughed, the changes to their routines were difficult. These types of changes in day-to-day activities were difficult for many of us to grow accustomed to.
As we all adjusted slowly to the necessary COVID-19 precautions, our tutoring participants adjusted too. “At first, participants would tease me about wearing a mask and gloves, maintaining 6 feet of distance, and putting items on the ground,” Cynthia said. “Now everyone sees these as common practices, and they are respectful of the guidelines I follow. They know I am doing it to protect them.”
Moving Our Supports Forward
Throughout this time, individuals employed their independent living skills to face brand new challenges. However, only 3 of Dee Dee and Cynthia’s participants left their homes to live with family. Tutoring continued in a new format and adjusted to individuals’ changing needs.
We learned that teaching life skills to adults with disabilities during a pandemic required new tools and flexibility. Our tutors rose to meet this new challenge. By creatively using Zoom, screen sharing, and other tech solutions, the team continued supporting participants near and far. As we prepare for the rest of this year, we are deciding which tools we will continue using. Have thoughts you’d like to share? Email email@example.com to let us know what you think!
This message was updated Friday, April 24th to reflect an extension of our remote working hours through at least May 30th and a new date for SPARK 2020.
Dear community members,
Over the past 2 weeks, our staff at Independent Futures has considered several options to meet the challenges posed by effects of the Covid-19 virus. Ultimately, our office staff has decided to work remotely until at least May 30th to comply with the state’s stay-at-home policy.
Thankfully, we are prepared for this type of remote work, and we are prepared to continue moving forward on crucial projects that can be done remotely. Additionally, our Direct Service team is looking into how much of our life skills tutoring programs can be done through technology like FaceTime and Google Hangouts. However, all of our non-essential activities, such as Walking Club and Art Club, have been cancelled through April.
At this time, the Direct Service team will provide the same comprehensive support to participants that they always have. However, we will also take necessary precautions to keep participants and staff healthy.
If anything changes, tutors will reach out to participants and family members to coordinate details about tutoring sessions. This will include answering questions like “Are we still meeting?” or “Where will we meet?”
Right now, we are working on coordinating a Plan B for SPARK, which was scheduled to take place on Saturday, April 18th. We will no longer meet in April. Instead, we hope you will join us on the new date of Saturday, November 7th. If you have purchased tickets already and are unable to attend on November 7th, please reach out. We will work with you to find the solution that best suits you.
To make things easier for our community, we will keep our communications as clear as possible and centralized. You may receive some more emails than usual from us in the next few weeks, and you should keep an eye on our social media for important updates. But as information becomes available, we will update this blog to reflect the most current information at all times.
We are thankful for everyone’s patience and support as we make these transitions, and we look forward to seeing you all in person as soon as we can. We will update this blog with more information by March 31st.
If you have any questions, please email firstname.lastname@example.org. Your question will then be forwarded to the appropriate staff member. In the meantime, stay healthy and take care!
On November 3, 2020, Americans will vote for their next President. The choice will come down to our incumbent President Trump and the Democratic challenger.
Between now and then, there are a lot of other decisions to be made – like who the Democratic candidate will be. Throughout the primary process, Americans in every state get to vote for their choice to represent the Democratic party. In Illinois, our primary is on March 17.
Many voters feel this election is the most important of our lifetimes, but that’s far from the only exciting aspect of Election Day 2020. In 2018, people with disabilities came out to vote in record numbers, surging by 8.5%. In 2020, many organizations hope to increase the turnout of voters with disabilities even more.
Keep reading this blog to learn more about registering to vote & learning about the candidates in Illinois.
How To Register To Vote
In Illinois, you can register to vote by mail until the February 18th deadline. If you are able to register online, the deadline is extended to February 29th. But first, there are several requirements. Illinois voters must:
– Be a U.S. citizen – Be 18 by November 3, 2020 – Live in your voting precinct for 30 days before the election – Not be serving jail time as a result of a conviction – Not claim the right to vote anywhere else
If you meet these criteria, then congratulations! You can register to vote. The next step is to start Illinois’ online voter registration application. The application will ask you for some basic identifying information such as:
– Your State ID/Driver’s License – Your name – The last 4 digits of your Social Security number – Your birth date – And your address
And that’s how you register to vote! If you are ever encountering problems or need support, you can contact the Board of Elections. Life skills tutors can also support you in registering to vote.
How To Be An Educated Voter
Now that you’re registered to vote, it’s time to make some educated decisions about who you cast your ballot for. To become an educated voter, it’s necessary to learn about the candidates to see who would represent you best and work hard for your interests.
Almost all of the major candidates for the Democratic nomination have drafted disability policies and plans – for the first time. As a voter with disabilities, you will want to research these plans, but make sure that you are also researching other issues & local ballot initiatives too. The following major candidates have plans for people with disabilities on their websites:
The League of Women Voters has general information about what will be on your ballot and some research about the candidates. Check out their site for important dates, including when early voting begins and what is on your ballot.
Finally, the AAPD’s Voter Resource Center includes information specific to disability issues. They have also teamed up with National Council for Independent Living (NCIL) for candidate questionnaires regarding disability issues. Only Pete Buttigieg, Bernie Sanders, and Elizabeth Warren have completed it; read the candidates’ responses here.
How To Vote
Illinois’ early voting period runs from March 2 – March 16. You can also vote on election day, March 17th from 6am – 7pm. Use the Board of Elections’ Voter Registration Lookup tool to find your polling location.
In Illinois, we have what are called “closed primaries.” This means that in order to vote, you need to pick a party ballot. You can choose between the Republican or Democratic ballots when you enter your voting location.
Once the poll workers have found your registration information and verified you are at the correct location, you will choose your ballot. After choosing your ballot, you can begin making your choices.
(PRO TIP: You can download your ballot beforehand from BallotReady and make your choices ahead of time! Just print it out, research the options, and bring it with you to your polling location.)
Poll workers will be able to assist you as necessary, depending on the type of voting machines your location has. Don’t be afraid to ask for help!
Being an Active Citizen
Now that you’re a registered, educated voter, what are the next steps you can take? This is the time to choose your candidates and then volunteer! You can call, text, or knock doors to spread the word about your favorite candidate.
So, between now and March 17th, how will you use your rights to become a voter with disabilities and an active citizen?
Looking for information about the 2020 General Election? This blog from July includes important information about voting by mail and how to research candidates.
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.