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No matter how many years apart you are, how many kids there are, or how close of a family you have, if you have a brother or sister, there is going to be some amount of sibling rivalry. Having a child who has special needs in a family doesn’t change that. As I’ve mentioned in previous entries, I have a younger sister, Stephanie. We are four years apart.
When we were growing up, we fought and got in trouble just like other sisters would. I’d pull her hair and run over her toes with my power chair, and she’d disengage my chair so I couldn’t move it and move things out of my reach! Like all kids, Steph stole my clothes and used to tell minor fibs to our parents, and I would rat her out. I wasn’t an angel either. I’d get in trouble for something, try to blame it on her, and sometimes mom and dad would believe me!
When children are growing up with a sibling who has some sort of disability, it may appear that the parents give more attention to the brother or sister with special needs. It appears that way because a sibling with the disability may need some extra assistance with various tasks. Though at times, it’s hard, the developmentally typical child will realize that just because mom and dad has to spend more time helping her brother or sister, it doesn’t mean that they love them more. It’s realized that the extra attention that is given to the child who has special needs isn’t necessarily wanted, but might be necessary. Steph had to do a lot of stuff on her own because our parents had to take care of me. An example I remember is when she was in 6th grade, she went to Washington D.C. for chorus. It was over her birthday, and my mom couldn’t go along because she had to stay and take care of me.
The difference in adult attention is not the only factor that affects sibling relationships. The typical child may have to deal with issues and do some things that a “normal” brother or sister will never have to. From going all around a building to find an accessible entrance to dealing with people who stare or treat their sibling wrong, the typical child adapts to a different lifestyle. At times, it’s not easy, but it’s part of life for the family. Steph also has had to explain my disability to her friends as well as defend me from people who make fun of me. She also does some of my personal cares such as feeding me without even thinking twice about it. Little ways of helping me have become automatic to her.
For the sister or brother with a disability, it’s not always easy either. Watching their “normal” brother or sister accomplish things that they know they will never be able to do can be difficult. When we were younger, it were things such as watching her playing in a soccer game, to doing simple chores around the house, to getting her drivers license and dating, that were hard to witness knowing I’ll probably experience those very normal things.
Over the last few years, as we’ve gotten older, our relationship has changed. Much to no surprise, after attending hundreds of my therapy sessions when she was young, Steph became an occupational therapist. She often tries to help me by suggesting some therapy techniques to make life easier for me. Admittedly, being the older sister, I often have a hard time taking her advice seriously even though I know she’s right. Steph too has to remind herself that she needs to be my sister first rather than a therapist. We’re getting better at finding a happy medium.
Recently, we’ve entered a new phase of life as Steph became engaged to a wonderful man. As one would guess, this milestone isn’t the easiest for me to accept. Don’t get me wrong, her fiancé is great and I’ve come to love him; it’s just that seeing my sister in love makes me wish it’d happen to me. It’s not easy, but I’m trying to experience happiness through her eyes. I do my best to be as supportive as I can, but Steph understands why at times things can be hard for me emotionally.
I’m well aware too that it takes a special guy to marry someone who has a sister with a significant disability. Early on, I’m sure Steph had to explain my circumstances to him. Again, it’s not an easy conversation to have, but Steph did it because she loves me and wants me a part of her life forever. Her fiancé has accepted and embraced the situation which I’m forever grateful for.
Steph and I have started talking about the future—when our parents are no longer able to assist me with things. I never ever want to be a burden to her life (and that’s something I’ll always be very cautious about), but Steph wants to be there for me when that time comes. Down the road, I’ll likely move closer to her, so she can assist me. “That’s what family is for,” she says.
I know having a sibling with a disability isn’t always easy. Steph has sacrificed a lot for me, but she says it has made her stronger. Words can’t begin to express how blessed I am to not only have her as my little sister, but also a best friend!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
The 2014 ABLE Act allows people with disabilities can establish special accounts where they can save up to $100,000 without jeopardizing Social Security and other government benefits. Currently $14,000 per year can be deposited in an account. Under new legislation known as the ABLE to Work Act, people with disabilities who are employed would be able to save their earnings up to federal poverty level in their ABLE accounts above and beyond the current cap.
In addition, in separate legislation, the ABLE Financial Planning Act would allow families to rollover money saved for an individual with a disability in a 529 college savings plan to an ABLE account.
DISABLED WORLD: Americans with Disabilities Financially Insecure and Their Caregivers Unprepared for Retirement
By SD Network, 2016-10-06
An American College survey of families with children with special needs found that a large majority of caregivers are concerned that they do not have enough financial resources to last their disabled relative's entire lifetime. Just as alarming, because of the time and cost required for caring for those with special needs, 30% of caregivers are not saving at all for their own retirement.
Caregivers aren't only concerned about what the future holds for their family member with a disability, they're also concerned about their own financial future. Many believe they will have to compromise their own retirement plans in order to be able to provide for their relative with special needs.
Do you know someone who has made a significant contribution to the advocacy work here in Wisconsin? Nominate them for a Diehard award to be presented at the 2016 Self-Determination Conference!
Download the Diehard Award Announcment and Instructions.
Download the Diehard Award Nominee Form.
Before heading to the polls on November 8, advocates for people with disabilities and older adults in Wisconsin are reminding candidates about one of the most important issues they will take a vote on if elected: long-term care.
Election Day is less than 40 days away and stakeholders are asking State Assembly and Senate candidates where they stand on issues important to the 60,000 people with disabilities and older adults who use long-term care to remain healthy and independent.
The Wisconsin Long-Term Care Coalition has released three documents to help people talk to and ask question of their local candidates about long-term care. We encourage you to look at these documents and have conversations with your local Assembly and Senate candidates regarding long-term care in Wisconsin.
LTC Question Release LTCCCandidateQuestionsRelease.pdf, 177KB ∞
Candidate Questions Questions for candidates.pdf, 385KB ∞
New national rankings find states across the nation have top services for people with disabilities, but also warns that more people are facing long waiting lists for supports. The study is based on a variety of data points to assess how people with disabilities live and participate in their communities, their ability to access supports and how satisfied they are with their lives. The analysis found an increase in the number of states allowing people to do such things as self-direct their services.
How are you involved with self-determination? Why did you join the SD Network?
Jennifer was asked three or four years ago by Deb Wisniewski to help her in a breakout session at the Self Determination Conference. She had a great time helping people sign up for the Network. Jennifer joined the Network so she could help others as well as herself learn about self-determination. “I have been an advocate most of my life,” she says. She has been involved in People First and the State People First of Wisconsin for over 11 years now. She wants everyone with and without a disability to have a say in how their life is ran--not to have someone else tell us who we can and cannot be with or what we do in our daily life. She has attended most of the first Self Determination Conferences. “I have seen with my own eyes how much self-determination can do to impact a person with a disability,” Jennifer explains.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jennifer is currently attending Fox Valley Technical College pursuing her second degree. My first degree is a technical one-year Office Assistant and she’s working on getting her associates degree to be an Administrative Assistant.
In addition to her schooling, Jennifer was recently elected to the Wisconsin Board for People with Developmental Disabilities (WBPDD). This is a huge honor that she’s extremely proud of.
Jennifer also mentioned that she has been happily married to her husband for 10 years now. They met through People First Wisconsin.
What tip or resource would you like to share with people who want to be more self-determined?
The tip Jennifer would give to people is not to give up on what you want. She was told in second grade by her special education teacher that she wouldn’t be able to do things like graduate high school, go to college, drive, live on her own and get married. She has done all of those things and then some. “I turned that thinking that this teacher had for me and used it to my benefit-- wish she could see me now,” she says.
Jennifer suggests that people use their friends and family for support. She loves how the BPDD has helped her tremendously in her life. She recommends the BPDD and Disability Rights Wisconsin (DRW) for assistance.
What message would you like to share with the members of the SD Network?
The message Jennifer would like to share is go for your dreams in whatever they may be. She explains that people can do anything if their put your mind and soul into it. “I hope you don’t get discouraged and give up. I want you to succeed like I am doing,” she says.
What are some of your hobbies?
Jennifer loves being a part of the Self-Determination Network, and she’s enjoying her new position on the BPDD. In her free time, she loves to read, spend time with her husband and two animals--a cat named Sassy and a dog named Dylan. In addition to everything else she does, Jennifer also enjoys being a part of People First Wisconsin. She is the current President for People First of Wisconsin also the Vice President for her local People First group.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
HELEN SANDRSON ASSOCIATES: Personalising Homecare: A Breath of Fresh Air for Rhona
By SD Network, 2016-10-04
A new home care approach in Scotland is making a real difference in older people's lives. Like in the U.S, increasing need along with reducing financial resources and workforce meant that achieving improvements using existing resources was key. In this pilot study, person-centered thinking tools were used to determine what really matters to people. They looked at each facet of the person's life and by thinking differently and making small changes, they found the person could get a lot more out of her staff time and greatly improve her quality of life.
NATIONAL COUNCIL ON DISABILITY: National Council on Disability Commends NHTSA Recommendations on Autonomous Vehicles
By SD Network, 2016-10-04
The National Council on Disability (NCD) recently commended the National Highway Transportation and Safety Administration (NHTSA) for its inclusion of people with disabilities in discussions leading to the release of its “Federal Autonomous Vehicle Policy.” The NHTSA not only involved stakeholders with disabilities in discussions, they also considered recommendations from the NCD's 2015 report on self-driving cars which suggested not to impose limitations on people with disabilities through unnecessary license requirements, and to base any limitations on actual risk instead of unsubstantiated fears.
First-Ever National Resource Center for Self-Advocacy to Empower People with Intellectual and Developmental Disabilities
By SD Network, 2016-10-03
We would like to thank the Great Lakes ADA Center for providing us with the following information about a new National Resource Center for Self-Advocacy for people with disabilities.
ACL is excited to announce the first-ever grant to establish a National Resource Center for Self-Advocacy (NRCSA) to empower people with intellectual and developmental disabilities (IDD) for enhancing their voice on issues important to their well-being and daily life. Self Advocates Becoming Empowered (SABE) will lead the effort in partnership with several organizations.
“The Developmental Disabilities Act was created to ensure ‘that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally-competent programs,” said Aaron Bishop, Commissioner for the Administration on Disabilities. “The National Resource Center for Self-Advocacy will support opportunities for people with intellectual and developmental disabilities to strengthen their skills and voice for this important self-advocacy role.”
The self-advocacy movement is a human and civil rights movement, stemming from the civil rights movement of the 1960’s, but led by individuals with intellectual and developmental disabilities to ensure they have the same rights, responsibilities, and opportunities as people without disabilities. Starting internationally more than 40 years ago, the movement has empowered individuals to make choices in their lives, provided opportunities to have a voice, and opened pathways for leadership development.
Following a series of regional Self-Advocacy Summits convened five years ago, the Administration on Intellectual and Developmental Disabilities, which is now part of the Administration on Disabilities within the Administration for Community Living, funded six technical assistance projects to support self-advocacy and share information. This new national resource center continues the mission of developing self-advocacy resources across the U.S. and will work during the next five years to:
· Compile resources, best practices, training curriculum, and success stories for an online clearinghouse accessible to the public;
· Research the history of the self-advocacy and other civil rights movements to understand their evolution, leadership, and best practices to produce a report and webinar on the findings;
· Provide training and technical assistance to new entities in addition to the established more than 1,000 self-advocacy organizations across the nation for advising, building consensus, recruiting youth, supporting grant writing, developing leaders, and more; and
· Establish a fellowship through mini-grants to disability organizations to create disability fellowships that offer leadership development and employment opportunities for fellows.
The center will collaborate with a diverse range of organizations including self-advocacy organizations, disability-related nonprofits, universities, state government agencies, and others to achieve the grant goals.
“The people affected by policy should have the greatest voice in developing it,” said Katherine Cargill-Willis, Program Specialist with AIDD. “With this grant, ACL aims to make this ideal more of a reality for people with disabilities.”
Self Advocates Becoming Empowered (SABE) will lead the effort as part of a $2 million, five-year cooperative agreement funded by ACL under the Administration on Disabilities as an AIDDProject of National Significance. Partner organizations on the new resource center include:
· Autistic Self Advocacy Network (ASAN)
· Green Mountain Self Advocates (GMSA)
· Heartland Self-Advocacy Resource Network (HSRN)
· North East Advocates Together (NEAT)
· Pacific Alliance
· Project Action!
· Our Communities Standing Strong (OCSS)
· Southwest Alliance
· Southwest Institute for Families and Children (SWI)
· TASH
· University of Missouri-Kansas City Institute for Human Development (UCEDD) (UMKC-IHD)
This project is part of an ongoing effort by ACL to amplify voices that are often missing from intellectual and developmental disability conversations, including self-advocates and people with and without disabilities from diverse communities. To this purpose, AIDD has awarded grants toUniversity Centers for Excellence in Developmental Disabilities, Education, Research and Service (UCEDD) for:
· Fellowships to support recruitment and retention of trainees with disabilities, and from culturally and linguistically diverse backgrounds. Participants complete a capstone project for creating systemic change for community-based activities.
· Planning partnerships with institutions that serve minorities to co-design training experiences that promote interdisciplinary approaches to research, training, and services.
· Diversity training across the UCEDDs to guide and sustain cultural competence within programs that serve people with developmental disabilities.
For more information, please email Katherine Cargill-Willis.