The following are stories submitted by participants of HCBS Waivers in Nebraska. Person-centered planning is a process-oriented approach empowering people to plan their life, find their voice, and work toward reaching their goals.
Thank you to our Success Story reporter, Mary Angus.
Christina laughs easily, but this has not always been the case. In Christina's life, she has experienced depression. She needs to let things sink in, and process her ideas and feelings before she is ready to talk. Kay, her Shared Living Provider, understands this about her. It is important for Christina, now that her depression has lifted, to have someone who understands and wants her to stay happy.
Christina's favorite pastimes are reading, doing puzzles, and using the computer. She also likes spending time with her family and taking vacations. Christina prefers Kansas City over Chicago because there are so many homeless people in Chicago. Christina says, “It's sad when people don't have the stuff that we have. I think we just take stuff for granted." When vacationing, Christina thinks the Kansas City Zoo is great and she loves shopping “everywhere!" She also enjoys Disney World.
Christina used to spend her days at a workshop. Once she started working at Little Caesars, Christina decided it was too much to do both. She chose to leave the workshop and keep working at Little Caesars. At her job, Christina uses the ovens to cook pizza. She has been at her job for five years and still enjoys it.
Christina recently joined the Governor's Advisory Committee on Developmental Disabilities. Her Service Coordinator, Shirley, received a notice that they were looking to appoint new members. Shirley thought Christina might be interested in the opportunity since she had led her last two team meetings. Shirley explains, “I've seen the growth in Christina. She does such a wonderful job advocating for herself that I asked her about it….if she would be interested." Shirley emailed Christina the committee's information and application.
Christina and Kay read about the Advisory Committee and talked more with Shirley, who said, “it was time for her to share a little of herself with people." Christina applied for the position and now advocates for others in addition to herself. At her most recent team meeting, Christina talked about how she would like to mentor young women.
Christina knows about mentoring because she has a great circle of support. Recently for her team meeting, Christina made a mint chocolate chip ice cream cake. Cooking is one of the skills she continues to work on.
Christina loves where she currently lives. She may consider moving into her own place once she has stronger independent living skills.
Andrea is a woman of few words and lots of action. She works with Direct Support Professional Norma, of NorthStar Services. Together they volunteer to keep their community library open three days a week.
Andrea's team has made a conscious effort to develop a full life for Andrea. Davies Memorial Library has been the perfect vehicle to do it, as it is an all-volunteer community effort. Andrea helps keep the library running smoothly, using skills accumulated in the 20 years she has been at the library, since graduating from high school.
Andrea uses all the office machines, making copies for Norma and library customers, laminating, and sending faxes. She uses a card cataloging system that identifies books by title and author. With support, Andrea entered all the library books into the computer. Now she maintains the file when new books arrive. Andrea checks out books for patrons, recording the date books are due to the library. She also helps coordinate the summer reading program for area youth.
When the pandemic kept people out of the library, Andrea and Norma created and distributed activity packages to their younger patrons. They filled them with snacks, markers, and craft materials. One activity included directions to explore nature, find rocks and leaves, and use them to create pictures. Andrea posted the pictures for all to see.
Andrea is famous for her window decorations and parties. For Valentine's Day, she created a beautiful curtain of hearts and red streamers, and co-hosted a Valentine's party. Partygoers from the community provided the food, and played Yahtzee and bingo for entertainment.
By working at the library, Andrea has met many business owners in town. Community members donate items to a library 'thrift store,' where Andrea practices communication and money skills.
Andrea takes pride in her reputation as a good cleaner. Over the years, she has worked in homes and businesses. Andrea completed milestones with NebraskaVR and explored employment beyond her hometown. Shamrock Nursery in O'Neill hired Andrea to clean, a perfect fit considering her love of flowers.
Norma creatively weaves Andrea's goals into her favorite activities. Andrea increases her independent living skills, specifically housekeeping abilities, by keeping the library clean. She uses checklists to help her initiate tasks. After cooking together, Andrea picks her favorite recipes and files them as 'keepers' in her own recipe book. Andrea improves her planning skills by organizing the library card file and setting up parties.
Andrea wants to improve her expressive language. The library parties and games add fun to learning to be more social. Yelling Yahtzee is a good way to work on increased voice volume!
All Andrea's activities help her with her goal of keeping involved in her community.
As Andrea works to improve her independence skills, she is starting to consider living in her own apartment, like some of her friends. When she decides to take that step, the many skills she is learning and using will make it a smoother transition.
When Elina's Service Coordinator, Deb, first talked to her about running her meeting, Elina immediately loved the idea and said, “If I can't advocate for myself, then who can?" Deb agrees, “Elina has always been an active member of her team meetings and advocates for herself well." Elina and Deb have known each other for a long time and work well together.
Nebraska's Person-Centered Planning (PCP) Series is a refresher for Deb. She strives to be better at helping participants lead. Deb says PCP has helped Elina “go a little bit further and be more responsible for how things proceeded" at her Individual Service Plan (ISP) meetings.
Sticking to a plan is an important skill. Elina used a Talk to Text app on her iPad to create an agenda for her annual ISP meeting. The app is Elina's assistive technology to dictate her meeting agenda. She gave each team member a copy. Unfortunately, she could not print in braille for her NCBVI counselor.
Those attending Elina's meeting included her developmental disabilities provider, Shared Living Provider, her Service Coordinator, and NCBVI counselor. Elina led her meeting. The meeting began by following up on the previous meeting's assignments and went right to Celebrations. Elina announced that she earned an Image Award for her accomplishments during the year! Elina had the award read to her team, many of whom were not aware of it. Elina said she “bawled her eyes out" when she received it.
The Image Award was only the beginning. Elina has improved her relationships. She is self-actualizing and becoming more self-aware. Elina is working on communicating more clearly and recognizing when she may be taken advantage of. Deb took meeting notes and asked questions when she needed specific information.
Elina's grandmother was her biggest motivator, and a special education teacher. She inspired Elina to continue her education. Elina dreams of going to college. She tried college a couple of times, but says, “I was young and naïve and didn't take things as seriously." Elina has not given up. She is learning to take initiative and follow through.
Elina receives job skills training through Region V, under a contract with the Nebraska Commission for the Blind and Visually Impaired (NCBVI). Elina's vocational manager is working with her to make an appointment with an admission's counselor and tour the local college. She has already sent her transcripts and preparing to take a college readiness assessment if necessary.
A new motorized wheelchair has improved Elina's mobility. She loves the new wheelchair. Now she plans to replace other out-of-date and ineffective adaptive equipment: Her sit-to-stand lift is old and lacks maneuverability. Her iPad no longer translates her speech accurately and may call or text the wrong person.
During her ISP, Elina and her team discussed ways to improve meal planning and making healthier choices. Elina plans to update her wardrobe; she is excited to revamp and reorganize her clothes the way she wants. She is also thinking ahead and would like to set up a living will to make her desires known in case something happens and she can no longer make decisions.
Elina has planned her goals and has strategies to achieve them.
Josh has been busy. So has Kathy, his Shared Living provider. Josh and Kathy first met years ago when he was 16 years old, living in Beatrice, and a state ward. Josh is now 41! Kathy and Josh kept in touch over the years, during which Kathy moved from place to place. When she moved to Kearney, he moved there too. When she moved to Iowa, Josh needed to stay in Nebraska. When Kathy moved to St. Louis, Josh visited every chance he got and even became a Cardinals fan. Finally, Josh and Kathy were both in Lincoln. He and a friend moved in with Kathy and her wife, Janice, who became their extended family.
Josh and his friend decided to split household chores and Josh ended up scooping dog waste from the backyard. Josh used day services in the mornings and scooped in the afternoons with Kathy's help. When Josh started scooping waste for other households, he hired a DD independent provider for support. He was scooping more and more yards, and hiring providers, as he needed them. It has been over eight years since he started. Now Josh is running his own company called PooPatrol scooping pet waste. He gains confidence being in charge.
Josh has a presence on the internet. His Facebook page has 319 likes and 322 followers. In July 2021, former reporter Cindy Lange-Kubick wrote about Josh in the Lincoln Journal Star. In a picture accompanying the article, he is wearing his PooPatrol cap and shirt, carrying goodie bags filled with PooPatrol pens, doggie bags, a doggie first-aid kit, and a ball.
Person-centered planning training has helped Josh run his own meetings, including staff meetings. He is a pro! Josh's priorities are keeping his business equipment in good working order, paying himself and his employee, adding employees, and attending more conventions. His goal for 2022 is to “make PooPatrol a viable company." A long-term goal is to buy a blue truck and paint his “Pooper the dog" logo on each side.
Josh continues to build skills to improve his ability to manage PooPatrol. When COVID is over, he wants to go to another Cardinals baseball game. Josh says he will take care of Kathy and Janice when they get old.
Ellie's mom, Stacey, wants to learn ways to make sure her 13-year-old daughter receives the best opportunities to have a meaningful life. “As our daughter, Ellie gets older we hope she understands that she has a say in how she lives her life and want to provide her with opportunities, like Person-Centered Planning, where she can see that she can make choices about goals and what she feels is meaningful in her life."
Participating in the four-part training series of Person-Centered Planning (PCP) was Stacey's first experience with anything like it. She continues to attend advanced trainings. She feels she is a better parent because of the experience. Stacey works at Munroe-Meyer Institute, as the family trainee for Leadership Education in Neurodevelopmental and Related Disorders (LEND). As such, she wants to share what she is learning about PCP with other children and families. Her excitement is apparent as she speaks. Her smile reaches her eyes!
Stacey is enthusiastic about the process of creating “a living, breathing document" and shares with her family, friends, and Ellie's teachers. She now has three quotes hanging on her office wall: "Nothing About Us without Us," "allow individuals the dignity of risk," and "presume competence." These are the foundation of Stacey's discussions about PCP.
Ellie is “funny and super-smart and kind and a little sassy…she takes a while to warm up to people.…she wants to make sure this is a person that is safe and that she feels comfortable, but once she gets to know people she just opens up and…she's a funny, funny kid." Ellie participates in choir and is involved in sports, including tennis and golf.
Stacey spoke with Ellie's special education teacher and they will use PCP for Ellie's next Individualized Educational Program (IEP) meeting. Ellie's parents talked with her about her IEP and how it provides her teachers a plan to help her succeed in school. Ellie's special education teacher also talked with her about leading her meeting and setting her own goals.
Although Ellie is uncomfortable speaking in a meeting, her teacher recognized Ellie does well using video. They wrote notecards and Ellie soloed in the video. Stacey points out this allows Ellie “the dignity of risk and [is] presuming competence." Communicating her own ideas and interests via video allows Ellie's “personality to shine!" Ellie finished her meeting answering questions and asking some of her own.
Ellie's IEP includes social, academic, and independence skill-building. Since Ellie's school is a large one, with almost a thousand students, she tends to keep her head down and focus on where she is going. Ellie wants to be able to talk to people more easily. The day after her meeting, Ellie had made a list of ways she can respond to other students as they pass in the hall.
Ellie uses self-talk, saying “I can do this" when she feels unsure of herself. She is working on being able to use an analogue clock and figure out things like what time she must start getting ready for school. Her goals include math topics, identifying money, and other life skills. Each goal is clearly written and measurable.
Ellie's IEP meeting boosted her confidence and she is very proud of being involved in her own meeting. This was the first IEP meeting Ellie had ever attended! It allowed Ellie's team to see her as both a student and a person with interests and dreams.
Stacey finds the simple PCP strategies and real-world experiences very helpful. Each training session builds on the previous ones. Stacey was impressed with the Children and Families session with Kathy and Alexa Brill, and now understands the hard work it takes to break down barriers. Alexa lives the independent life of her choosing while reaching for her dreams. Stacey wants the same for Ellie.
“All the information has been useful...I appreciated the message of self-advocacy and the idea that people with disabilities can lead independent, enriched lives and have a meaningful place within their community. I hope that as a community, all people will begin to see every person as someone who is valued and important. A place where we live in the framework of us/we rather than they/other. Person-Centered Planning and the trainings being held work to help make this framework attainable."
Janet became involved with People First of Nebraska in the early 90s. She won the Ray Loomis Self Advocate of the Year Award, the highest honor given to a member in 1995 and 2008. Janet's love of leading prompted her to write and publish, “Being a Leader" as a teaching tool for up-and-coming advocates. Tip 4 is “Stick to it and never give up! As someone once said, 'Enjoy the journey, life is not a spectator sport.'"
Janet recalls having been sick most of her life, which often kept her from school as a child. Accommodations helped her with education. Her resource teacher made a big difference and had her take tests in a quieter room. Janet finds it easier to learn in a one-on-one situation. Her sister helped a lot, treating her “like a normal person" and believing in her even when Janet could not believe in herself. Her friend, Sister Janice, also believed in her and saw opportunities for Janet. There were always people in her life who supported her and helped her keep going.
Attempts at employment were often unsuccessful. Janet felt she was too slow to keep jobs for long. She now finds doing things for others and volunteering makes her happy. She likes to help her mother and buy groceries. She has “come a long way" and is contributing.
Person-Centered Planning is a learning experience for Janet. It is not unusual for her to respond to aspects of training that strike a chord with her. Janet moderates breakout sessions and enjoys asking questions and listening to people's answers. As a moderator, she knows people are human and may not quite know what to say. She shares her story so others have an easier time. She wants to help them speak for themselves.
During Person-Centered Planning trainings, Janet sometimes picks up her toy poodle Molly. Molly is Janet's support animal, though they seem to trade the role back and forth as Molly ages.
Janet lived in Kearney for many years before moving to Grand Island to be closer to her parents. When her father needed extra care, she moved in. Since her father's death, Janet continues to help her mother, though she misses him. Janet talks to her father more now than when he was alive; she asks for advice sometimes just vents.
Janet's perfect day would be one where she does not feel panicky. She would listen to lots of different kinds of music and hang out with her mom. They could go eat out or just sit and watch television. Janet feels blessed to still have her mom and live with her.
Creating a One-Page Profile was difficult for Janet. It is hard for her to focus on questions. After some thought, she realized people like and admire her for being friendly, kind, helpful, thoughtful, and giving. These are what are important to her.
Janet enjoys mowing the lawn and removing snow from her mother's driveway and sidewalks. She likes playing games on the computer and taking care of the security cameras, which her dad used to do. Every day she tries to create something fun to do. Janet values knowing people from “all over the place" and collaborating with others.
Transportation is one-way people can support her. It may be the biggest way people can help. Janet also appreciates someone being there to listen.
Janet's biggest dream or goal involves Kansas City! Her sister lives there, and the Chiefs are there. Maybe someday she can get an autograph from one of the players!
Eddie was thrilled to let his whole planning team “know the inside," or the real Eddie. He and his mother, Candi, used what they learned from training on person-centered planning to guide his August meeting. Candi was excited that Eddie would be more in charge of this meeting. She put together an eye-catching PowerPoint with his agenda. Eddie wrote and delivered the welcome message at his team meeting.
The team would look at how things are today; how to build on Eddie's strengths; and honor his preferences, choices, and abilities. Eddie is friendly and social. He is also a little shy. Sometimes his emotions make it hard for him to talk about things and explain his feelings. One thing that helps Eddie is writing music. He says he just hears it in his head. Eddie loves listening to music, especially music from the 50's and 60's, including doo whop. One of his favorites is “Peggy Sue" by Buddy Holly and the Crickets.
The director of his DD agency provider (a former teacher), his Service Coordinator, and the residential provider he lives with attended Eddie's meeting. Although unable to attend, Eddie's job coach provided information. Eddie wanted his team to understand him, so his presentation was shared with the team beforehand.
Eddie and his mom took charge of his meeting. Candi felt other members of the team really liked that. At the meeting, discussion focused on what is important to Eddie: What activities, things, and organizations does he value? The list was long and varied, just like his interests. They discussed how Eddie interacts with people, what he likes and dislikes, and how medical issues affect him. Eddie's family, community, and spiritual life are very important to him. Everyone contributed to the discussion and the meeting was more relaxed and conversational than past meetings. By the end of the meeting, the whole team was energized.
Eddie's team has a clear plan to help him reach his goals. Eddie will continue his community activities and sports. He is taking classes to improve his coping skills so he can feel better with his emotions. He will go to the YMCA three times a week, eat better, and focus on how to do everyday things to help him become more independent. Eddie is competitively employed and has big plans for his future. He wants to be a sports broadcaster. He volunteers at “All Play" in Omaha, but would like to become a professional and make his own money.
With a little more encouragement, Eddie can call all the shots at his next person-centered meeting.
Emma's mother, Teresa, is excited for Person-Centered Planning to “be standard practice within the state of Nebraska." Her daughter Emma, who is 18, transitioned from the Aged and Disabled Waiver to the Comprehensive DD Waiver in the spring. Teresa said she welcomed the opportunity to have her daughter benefit from a quality, person-centered planning session. Emma was connected with a Service Coordinator trained in Person-Centered Planning.
When it came to scheduling Emma's meeting, Teresa felt some anxiety about the invitations. She said, “What I appreciated from the training, [was]...when Mark said, 'just remember this isn't about you.'" She could do this. Emma used her own artwork on invitations. Teresa rented a meeting room at a recreation center Emma belongs to, which had projection equipment Emma could use.
Emma let each person know why they were invited and what they could contribute. Teresa texted Emma's friends from her ball team, even though they would be going to college. “Next Tuesday at 5:30 we are having Emma's very first ever Person-Centered Planning session. That basically means a time for people who are important in Emma's life to get together to brainstorm ways that she can be supported in building the kind of life she wants to live. You are someone that has stayed connected with Emma throughout her high school years. While we know you will not be in high school next year, we are hoping you can attend. Your contribution would primarily be helping us to understand high school, how kids connect and brainstorming ways to have Emma be connected. We are having it at Papillion Landing and will be serving pizza. Please let us know if you are able to attend." People from Emma's school were invited, but no one responded.
The evening of her meeting, Emma got together with her mom, Teresa; her dad; two high school friends; her SC; a direct care provider; the director of a service provider organization; a future care provider; and a coworker-friend. The SC made sure Emma was in charge and asked Emma to choose who would introduce themselves. Emma was the director. She showed the PowerPoint she created about what she wants out of her life. The group ate pizza and cookies. They discussed things Emma might talk about at her 10-year reunion and focused on social relationships. Emma's friends talked about social barriers created by paras, teachers, and the school routine. Teresa wished there was a teacher there. At the end, Emma gave each person a hand-designed thank you.
Over the summer, Emma pointed out the Bike Patios downtown. They rented one for her birthday and Emma rode for ice cream with her friends and family.
Emma is very social, so one of her friends helped her set up a Snapchat account. Emma is designing business cards with her Snapchat and Instagram accounts to give people she wants to keep in touch with.
School has started for the fall. One of the barriers described by Emma's friends was that when Emma got off the bus at school last year she was separated from her peers. Emma's parents have been clear with the school that this was unacceptable.
Since Emma wants to continue school, one friend invited her to spend a day at UNL to experience college. Emma got together with another friend and made a list of things to take to college. Other friends are introducing her to girls who can go with her to football games. Emma and a friend went to the zoo; it was her first time without an adult. “Emma hanging out with a friend," Teresa said, “I truly think that it is the result of Person-Centered Planning."
“[The] greatest challenge is finding out who your child is drawn to and who is drawn to her," explained Teresa, “There has to be a realization that communication between home and school is more than just what's in a book. They are the keeper of Emma's memories."