ACL programs help promote integration, inclusion, and self-determination for older adults, people with disabilities, and their families. Learn about some of the people who have benefited from community living:
- Spotlight on Self-Advocates: Micah Fialka-Feldman
Micah Fialka-Feldman is leading the way for adults with intellectual disabilities who are pursuing dreams of higher education. After fighting successfully to live in a university dorm as a college student, he now devotes his time to sharing his experiences, advocating for inclusion, and continuing his education.
Getting the chance to live the full college life did not come easy. In 2003, Fialka-Feldman began classes at Oakland University in Rochester, MI, as part of the now-defunct OPTIONS program, which allowed students with intellectual disabilities to take classes and participate in student clubs. Wishing to fully experience college life and bring an end to his two-hour bus commute from his parents’ house, Fialka-Feldman applied for campus housing in 2007. The university initially approved his application but later rejected it, leading to a two-year struggle that resulted in him winning a lawsuit against the school and moving into a dorm.
During his time at Oakland, where he took classes in public speaking and political science, Fialka-Feldman says that he “had a great time taking classes and being included in classes.” Throughout his legal battle, he gained valuable public speaking experience and began presenting at conferences on topics such as self-advocacy, self-determination, and his experiences in inclusive education.
Fialka-Feldman has since become a national speaker. He likes to talk about “how if kids want to be included, they should be included, [and] how they can have a good experience,” he says. Regarding inclusive higher education, he says that “colleges need to know that students with disabilities can go to college, and they should have a chance to go to college and take classes.”
Fialka-Feldman graduated from Oakland in 2010 and began a new adventure in 2012 when he moved to New York to work at Syracuse University. After living in Michigan his entire life, Fialka-Feldman is happy to be in a new place and enjoying meeting new friends. He began work as a graduate assistant for the School of Education’s “Perspectives on Disabilities” class, where students discuss different disabilities and issues in inclusive schools and communities.
Although being a graduate assistant has its own challenges, such as dealing with students who turn their work in late, Fialka-Feldman says that he has learned a ton about teaching. “I get to do stuff that I didn’t do as an undergrad…grade papers, talk to students, help in conversations, and help teach,” he says. In the fall, Fialka-Feldman will add even more to his plate by taking a class on inclusive education.
In addition to his graduate assistant work, Fialka-Feldman is a peer trainer for the university’s Peer to Peer Project, a network of students that connects traditionally enrolled undergraduates with students participating in the ACCESS and OnCampus programs, two inclusive programs for students with intellectual and developmental disabilities. He continues to speak at conferences, although he has reduced his number of speaking engagements to once a month since starting work at Syracuse.
Fialka-Feldman has served on numerous boards and committees, including the National Project Advisory Committee for the Center for Postsecondary Education for Students with Intellectual Disabilities (a Think College initiative), the board of directors of TASH, and the governing board of the National Youth Leadership Network.
Fialka-Feldman says that his future goals include teaching more classes, continuing his public speaking efforts, and writing about his experiences, including possibly writing a book. On employment, Fialka-Feldman says, “sometimes I don’t think people want to hire people with disabilities because they don’t think [they] can do a good job. But if they meet them, then can they see that people with disabilities can do a lot.”
To learn more about Fialka-Feldman’s experiences, visit his website at http://www.throughthesamedoor.com.
- Inclusion in Action: Giving Riders a Voice in Transportation Planning and Making Dialysis Less Stressful
Dialysis patients generally receive treatment several times per week, and missing a session can have real health consequences. Unfortunately, getting to treatment can be a challenge, and programs that try to address the problem often do not understand the unique needs of these patients. For many dialysis patients, rides that do not show up and waiting hours to go home are familiar experiences. As Troyce Crucchiola, a dialysis patient in Portland, OR describes it, “our lives are so much about hurrying up to wait.”
Often the problem is a disconnect between those developing and running the program and the consumers who are using it. “All of the people in transportation know that they move dialysis patients, they know that we go to and from treatment, the drivers know that they have people in their cars they bring home from dialysis that don't look good, that don't feel good, that just want to go home,” Crucchiola said in an interview with Portland Radio Project, “but as far as the process and what we go through and what is involved, they don't know that.”
What if those developing and running the programs did know? What if transportation programs, like the ones used by many dialysis patients, were designed by and with the consumers using the service? ACL and the Federal Transit Administration are working with the Community Transportation Association of America, Easter Seals, the National Association of Area Agencies on Aging, and Westat to find out.
Through a joint Transportation Research & Demonstration Program, we are supporting community teams to make transportation more responsive to the needs of people with disabilities and older adults by including these consumers in the design and implementation of coordinated transportation systems.
Ride Connection, a community team in Portland, is using their grant to make getting to and from treatment less stressful. While many service providers include riders in focus groups and advisory councils, Ride Connection is going further by including consumers in every step of development.
By giving dialysis patients the opportunity to shape the program from the beginning, Ride Connection was able to identify gaps and needs that were going unmet. Among the changes that have come from consumer involvement are disability awareness and competency training for drivers and new scheduling procedures being piloted at a dialysis center to reduce wait times. Patients also made a volunteer recruitment video highlighting the importance of reliable transportation.
While it is too early to know the long-term impact of giving riders a greater voice in the process, initial feedback has been positive. In a survey of riders before changes were made, 63% reported occasionally or frequently feeling stressed when thinking about transportation to and from dialysis. After changes, just 4% of respondents reported this level of stress.
One of these riders is Crucchiola, who played an active role in developing the program and providing training for drivers. “Involving patients affected by the problem directly and using their skills, observations, and input created a workable solution to a big problem in a short period of time,” Crucchiola said.
Ride Connection is just one of seven community teams who received grants for the last two years to make their transportation systems more inclusive and responsive.
This month, CTAA is announcing a new round of demonstration grants funded by ACL to support additional communities in achieving this important goal. There will be a conference call to answer questions about the demonstration grants on Wednesday, Jan. 27 and applications are due March 18.
Learn about the other teams participating in this program and how your organization can apply for the next round of demonstration grants at www.transitplanning4all.org.
DC Program Helps Daughter Care for Mom at Home
At 33 years old, I am the sole caretaker for my mom who is 61 and living with a degenerative neurological disorder. Over the past year, she has gone from teaching special needs students full time to being unable to manage most activities of daily living, such as bathing, dressing, and toileting. I have also taken over all the administrative obligations in her life, including managing finances and making health care decisions.
Services funded by the Older Americans Act (OAA) and offered by my local agency on aging have been instrumental in allowing me to keep my mom at home and out of much more costly and unwanted institutional care. My mom’s strength, mobility, and cognitive capacity have declined to a point where she is unsafe by herself for extended periods of time. While I pay for part-time in-home care, I am unable to afford full-time help.
Several days each week I take my mom to the Downtown Clusters Geriatric Day Care Center, supported in part by the DC Office on Aging (DCOA), which is funded by the OAA. At Downtown Clusters, my mom receives loving care from an incredible team, an opportunity to socially engage with others, a yummy lunch, and access to physical and occupational therapy that help to maintain her strength. I receive peace of mind and renewed professional focus when I know my mom is well cared for and I am not further burdened by paying for full-time care.
The Downtown Clusters team keeps me fully apprised of my mom’s participation in their activities, and each day when I pick her up, she has a beaming smile and says she had a "good day." The staff there has even helped me with some respite care expenses, so I was able to go away for a girls’ weekend in Charleston for reprieve from the stress of caregiving. I have no doubt that because of Downtown Clusters, my mom and I are happier and coping better than we otherwise would be. Not to mention my employer, who is pleased that I’m taking much less time away from work to meet my mom’s care needs.
I am also accessing information and referral services through the DCOA, which are also supported by the OAA. As my mom continues to decline, we will need to arrange for personal care far beyond what I am able to physically or emotionally provide.
I am committed to keeping my mom at home as long as possible during her difficult journey, and because of the team and services funded by the OAA, I know that timeline is much longer than it would have been without them.
- Florida Developmental Disabilities Council: Project SEARCH
The Florida Developmental Disabilities Council has made significant progress toward its goal of providing competitive, integrated employment opportunities and developing a range of customized employment services for individuals with disabilities through its “Project SEARCH” program.
Project SEARCH is an innovative work-based program that provides training in independent living, employability skills, and specific job skills. This career program is offered to high school students as a school-to-work program and to adults post graduation. The directors of the original Project SEARCH from Cincinnati Children’s Hospital and a state-wide coordinator in Florida have collaborated to provide training and assist pilot sites in beginning activities that emphasize identifying and establishing business partnerships and provide technical assistance and support. Sixteen individuals have gained employment as a direct result of this effort.
Across the program as a whole, 25 individuals have found gainful employment, and another 245 participated in direct training relating to employment because of Council efforts. The participation of the Project SEARCH community partners has been impressive, resulting in $218,500 additional funds for these programs across the state.
- Meals Deliver Food and Friendship in Washington
Jack is five years old and has a new friend, Lloyd. They meet every other Tuesday to play on the tree swing in Lloyd’s front yard. Like all boys, Jack and Lloyd roughhouse in the leaves, holler a lot, and have an all-around good time. What makes this friendship a little different is that Lloyd is 83 and uses an electronic speaking device due to a tracheotomy.
Jack, along with his mom, sister, aunt, and cousins, delivers meals to Lloyd. His mom Jenae explains, “I was looking for something to do in the community to put hands and feet to what we teach our children about loving our neighbors. I live in Washougal, WA and saw the A-frame sign in front of the Meals on Wheels People center and called to volunteer.”
“Wanda, the center manager, suggested I bring someone along with me on the route and I immediately thought of my sister, Katie, who lives in Camas. I thought bringing the kids along would be a blessing to lonely, homebound seniors.”
Katie picks up the story. “At first, all the kids were afraid of Lloyd. They had never seen anyone with a tracheotomy and the electronic speaking devise was scary to them. But Lloyd is so outgoing and kind. He let the kids touch the talking device and explained that it helped him talk to them. And when he showed them the swing, that pretty much cemented their friendship!”
Visiting with “Mr. Lloyd” is now the kids’ favorite stop on their Meals on Wheels route. Lloyd perks up around the children as well. He gamely joins in with their play.
“We deliver more than just a hot, nutritious meal,” said Center Manager Wanda Nelson. “We provide a friendly visit, a little companionship, and in the case of Mr. Lloyd, a pal to play on the swings!”
—Meals on Wheels People
- New Hampshire Disabilities Rights Center Works to Make Emergency Preparation More Accessible
As a result of the New Hampshire P&A, the Disabilities Rights Center of New Hampshire, model municipalities project, policies and practices related to people with disabilities were positively changed and the potential barriers for people with disabilities are more widely understood.
Working with key municipal staff members and the local Red Cross, the New Hampshire P&A provided guidance in developing criteria and priorities for compliance with Americans with Disabilities Act. The P&A held an introductory session that established goals and processes, and additional sessions on the evaluation of physical sites, analysis of existing policies, completion of new draft policies, and a plan for increasing physical access.
The P&A also hosted a Disability Roundtable featuring local people with disabilities who explained their points of view and experiences dealing with emergency situations. Attendees included municipal personnel from human services, education, fire and police departments, public utilities, and senior services. Attendees also represented the local Red Cross and independent living center. Emergency managers reviewed and developed policies to improve physical and communication accessibility in emergency planning and responses.
- New England Pension Assistance Project Locates Lost Pension for Widow
When Katherine suddenly became a widow at the age of 52, she contacted her husband’s past employers to inform them of his death. Among his employers was the public utility of a municipality where he had worked for nearly 10 years. Katherine knew that her husband had earned a pension while he was employed by the utility, so she reported his death to the municipality a few weeks after his death.
After two months of frequent trips to the municipality’s main office, Katherine had yet to obtain survivor benefits or even the promise of the benefit forms she needed to claim her husband's pension. Not knowing where to turn for help, Katherine contacted the Rhode Island United Way help line, which recommended the New England Pension Assistance Project.
Although Katherine’s husband had worked at the municipality’s public utility for more than nine years, the path to her husband's pension was not simple. Through detailed casework, the Pension Assistance Project discovered that while her husband had worked for the municipality’s public utility, the municipality privatized and later replaced the public utility with another company. To further complicate matters, those two companies were bought and sold by other companies during the time Katherine’s husband worked for the municipality.
After exhaustive research, the Pension Assistance Project found that three entities were responsible for portions of his pension benefit.
When Katherine made her claim for benefits, the municipality did not have contacts at any of the three companies. Moreover, the municipality did not appear to know that one of the companies for which Katherine's husband worked was no longer in existence and that a new company was now responsible for his pension.
This case was quite a tangled web, but the Pension Assistant Project's diligence helped Katherine to obtain a monthly survivor’s benefit, ultimately valued at more than $100,000.
The work of the New England Pension Assistance Project didn’t end once Katherine began receiving benefits. It provided the public utility with a list of contact names, addresses, and phone numbers to help ensure that the next retiree or survivor would have an easier path to benefits.
Note: for privacy, the name of the person featured in this story has been changed.
- Empowering Veterans to Direct Their Care and Services
ACL provides an array of home and community-based services to veterans through the aging and disability networks. These programs include the Veteran-Directed Home and Community-Based Services (VD-HCBS) program, the National Family Caregiver Support program, and lifespan respite programs.
The VD-HCBS program began in 2008 as a partnership between the Veterans Health Administration (VHA) and ACL. It provides veterans of all ages the opportunity to direct their own long-term supports and services and continue to live independently at home. Eligible veterans decide for themselves what mix of goods and services best meet their needs. They manage their own flexible budgets and hire and supervise their own workers.
ACL and VHA’s long-range national vision is to have a long-term service and supports system that is person-centered, consumer-directed and helps people at risk of institutionalization to continue to live at home and be engaged in community life.
The two videos below show the program in action in San Diego and Central Texas.
- From Workshop to Workforce: Tennessee’s Model for Reform
Home and community-based services (HCBS) provide opportunities for individuals with disabilities and older adults to receive services in their own home or community. On January 16, 2014, the Centers for Medicare & Medicaid Services (CMS) published a final rule that sets forth new requirements for states using Medicaid funds to pay for HCBS, supports enhanced quality in HCBS programs, and adds protections for individuals receiving these services. In addition, the rule reflects the intent of CMS to ensure that individuals receiving services and supports through Medicaid’s HCBS programs have full access to the benefits of community living and are able to receive services in the most integrated setting.
ACL is highlighting an example of a promising practice for employment benefits designed to meet the needs of individuals, promote integrated employment, and comply with requirements of the HCBS settings rule and the Supreme Court’s Olmstead v. L.C. ruling. With regard to Medicaid-funded employment services, it is the state’s responsibility to ensure that 1915(c) HCBS supported employment waiver services are furnished to a waiver participant to the extent that they are not available as vocational rehabilitation services funded under section 110 of the Rehabilitation Act of 1973.
SRVS (pronounced “serves”) ran the only sheltered workshop in Shelby County, Tennessee. The workshop had been operating since 1962, and served 110 adults in 2012. “Our workshop was our face in the community,” said Tyler Hampton, SRVS’ Executive Director. “Everybody loved us. People were happy. When you walked through people would hug you.”
So when Tennessee state leaders asked him to apply for technical assistance funded through the U.S. Department of Labor, Office of Disability Employment Policy's Employment First State Leadership Mentoring Program, Hampton declined because he knew it would mean closing the workshop.
After a second call from the Tennessee Department of Intellectual and Developmental Disabilities, SRVS committed to assisting 20 beneficiaries transition to integrated employment in the fall of 2012.
SRVS began receiving technical assistance from subject matter experts in early 2013. During a presentation at SRVS on customized employment, a technical expert described the benefits of working in the community for people with disabilities, including the opportunity to develop friendships and natural supports in ways that would be more realistic than in workshops. Another technical expert with experience in transforming sheltered workshops led a walk-through of the SRVS workshop. These experiences opened Hampton’s eyes to what he characterized as “the inequities that were happening within our workshop.” “I didn’t realize it,” he added, “I knew we had to close.”
In 1962, youth with disabilities and their families didn’t have many options, according to Hampton, so sheltered workshops were created because families wanted their kids to work. “Internally we thought we were doing great things,” he said.
Today, he believes the workshop model has “lived its purpose.” It took a while to convince other staff that they needed to close. Hampton knew he would get “push back” from SRVS’ Board of Directors, so he proposed a steering committee to look at ways to transition the workshop. The committee met weekly to identify strategies for the workshop transition and reported to the board every month. The steering committee included several influential board members, including one man whose son had worked in the workshop and successfully transitioned to competitive employment.
SRVS started by implementing a curriculum focusing on “soft skills” including: resume writing, handling conflict with a boss, dressing appropriately, and navigating a professional environment.
Beneficiaries had participated in the SRVS workshops from 12 to 40 years. People were assessed and placed in three categories: ready for employment, individuals who needed some skills development, and those resistant to change or lacking in many necessary skills. SRVS adapted their services to meet each person’s specific needs. Individuals who transitioned to integrated employment were welcomed back as peer motivators. SRVS created a “wall of fame” featuring pictures and success stories and displayed it in the main hallway.
In August 2013, the SRVS board formally agreed to close the sheltered workshop and on June 30, 2015, after more than 50 years, the workshop closed.
Of the 110 beneficiaries, 42 are now successfully employed and 62 are receiving supports as they seek employment. A few of the older beneficiaries were interested in work but their families wanted them home to support aging parents. Six transitioned home or to other facility-based providers.
Working directly with beneficiaries, Troy Allen, Director of Community-Based Services, said “people started seeking me out saying ‘I want to go out’,” with interest in more community integration as their peers achieved successful employment.
Today, SRVS’ community-integrated model provides supports to 200 people in the community including just shy of 100 people in community employment, according to Allen. With the change in business model came a shift in their approach to hiring and training staff. The job function and focus of the sales staff member shifted from securing workshop contracts to exclusively seeking and developing community employment opportunities and business partnerships. They cross-trained job development staff so anyone could do intake, discovery, and placement. Finally, they hired stabilization coaches to support individuals once they are employed.
SRVS implemented a customized and supported employment model through a collaborative Letter of Agreement with Tennessee’s Vocational Rehabilitation agency.
SRVS also credits $950,000 in grants over two years from local foundations and corporations for assisting with infrastructure changes including purchasing equipment and supporting hiring additional staff to help transform their model.
Hampton believes that the Employment First initiative appeal to funders for three reasons: “it deals with increasing employment opportunities, is in line with current best practices for people with intellectual and developmental disabilities, and includes a business model change to allow people better access and involvement in their community.”
This story is from ACL’s integrated employment blog series which profiles local programs promoting integrated employment for people with disabilities.
- Meet a Volunteer Long-Term Care Ombudsman from Idaho
Being a volunteer ombudsman has been a very special experience. I have learned so much about working with people with memory issues through training offered by my local Area Agency on Aging, the information that is sent to us via email about the many different aspects of elder care, and listening to talks by professionals. Most moving to me, however, is working with the individuals dealing with memory issues. I have seen how my presence, hugs, listening, and advocacy makes a difference in the residents’ well-being. I have learned that a smile or touch of the hand can immediately strike a chord of calm and interest in an individual's demeanor. Learning to negotiate the difficulties of this work is well worth hearing a "Hi" on occasion, walking with a resident friend around the facility, or listening to stories that residents want to share.
I am proud to be an ombudsman for those in elder care facilities. It makes me a better person, increasing my ability to love and learn compassion and understanding. I am grateful to be aging now as opposed to 50 years ago. When I was young, facilities were overcrowded and only basic needs were met. I am grateful for the organizations we have today that focus on continued advocacy, research, improvements, and solutions.
What does "Age Out Loud" mean to me? It means ACTION: getting out into my community to interact, advocate, and educate myself and others about how to create the best possible world for our elders.