Si tiene un niño o miembro de la familia con una incapacidad intelectual o de desarrollo, puede contactuarPathfinder a: 615-875-5083 para recibir más información sobre recursos y servicios.

Beckett in the Bucket!

CONNECTION Published quarterly by The Arc Tennessee

Fall 2019

My name is Jennifer Aprea and I live with my husband and two kids in Arrington in Williamson County. I would like to share a personal story as to why the Katie Beckett Program is so important for families like mine who don’t qualify for TennCare for our children with disabilities because our income is too high.

In 2012, our second child was born. His due date was July 3rd, so we hoped for a patriotic 4th of July baby, but God had other plans and instead of a mid-summer birthday, my son Ryan was born on March 20th, the first day of spring. He was only 25 weeks gestation, so he was 3.5 months premature, and weighed in at only 1lb 13oz. We spent his first seven months by his side in the NICU as he fought for his life, leaving his one-year-old big sister, Dani, with her grandparents for most of that time. Due to his extreme prematurity, he had to have multiple surgeries in his first year of life, and the only way we could bring him home was to give him a g-tube for his nutrition and oxygen for his lungs. He is also visually impaired and profoundly deaf in both ears as a result of this hospital stay. Now at seven years old, he has been diagnosed with global developmental delays and autism.

My husband and I were both elementary teachers when Ryan was born, but we have both since “retired” from that job because the schedule wasn’t flexible enough to take our son to all of the doctor’s appointments and therapy sessions he needs. Instead, we started a small business that earns us enough to get by and allows us to work from home. Last year, now that both kids are in school, I

decided to apply for a job advocating for families with intellectual and developmental disabilities at

The Arc Tennessee. I really missed teaching, but still couldn’t manage the schedule, so this was the next best thing.

I accepted the job with The Arc in September 2018, and in October I took my son Ryan to an audiology appointment only to discover that he had been removed from TennCare due to

the increase in income my family received from this new job. I was given no notice from TennCare

and we had to cancel the appointment which would have cost $1500 out of pocket and reschedule it after

my new private insurance kicked in from my new job. Since then, I’ve come to find out that private insurance does not cover many of the services my son needs, including various therapies and home health nursing. So now we must make hard decisions like: Do we pay for a nurse out of pocket to care for our son so that we can take our daughter to her softball game? Do we pay for ABA therapy that he needs out of pocket, or just continue to work with him at home with our limited knowledge and time?

Unfortunately, our story is not uncommon. This is the case for many other families who have children with complex medical needs and must work to support their families. Therapy sessions and home nursing aren’t things that our kids can have just eight times a year and be done. Private insurance often puts caps on the numbers of therapy sessions or excludes certain services, like home nursing, altogether. I am so thankful that the State of Tennessee

Continued on page 8Ryan & Dani

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MISSION STATEMENT The Arc Tennessee empowers people with intellectual and developmental disabilities and their families to actively participate in the community throughout their lifetime.

Date & Time Event PlaceLight up a Life Holiday Happy HourBoard MeetingDisability Day on the Hill summitDisability Day on the Hill meetingsPushing Boundaries EventBoard Meeting Webinar Annual/Board MeetingTN Disability MegaConference

Raymond James Bldg, NashvilleInn at Opryland, NashvilleTBALegislator OfficesInn at Opryland, NashvilleBoard members’ computersNashville Airport MarriottNashville Airport Marriott

12/3/19, 6-8:30pm12/7/19, 8:30am2/3/202/4/202/15/20, 8-4:30p3/7/20, 9:00am5/20/20, 3:00pm5/21-22/20

CALENDAR REMINDERS

http://www.thearctn.org

Do you have something you would like published in the Connection? Please send it in! Information on where to send your stories and pictures or comments is in the box on the left of this page.

Deadlines for issues:

Winter 12/31/19Spring 2/28/20Summer 6/30/20Fall 9/30/20

Support The Arc Tennessee by sign-ing up to participate in the Kroger Community Rewards® program at www.kroger.com/communityrewardsand use The Arc TN’s ID 37451. Ev-erytime you shop at Kroger and use the rewards card you already have you will be donating to The Arc TN! NOTE: You must update your profile every year!

http://www.thearctn.org/Calendar.php

When customers shop Smile Amazon, the AmazonSmile Foundation will donate 0.5% of the price of eligible purchases to the charitable organization selected by the customer. Under Your Account, select The Arc TN as your charitable organization. https://smile.amazon.com/

Are you a member of The Arc but do not receive our emails? Send an email to info@thearctn.org. Put “Subscribe to Listserv” in the subject line and include your first and last name in the body of

the email!

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Since this is my first time placing an article in The Arc Connection, I would like to make it more of an introduction. Our family has been part of The Arc Tennessee and The Arc Rutherford County

since 2014. We have been very fortunate to become part of The Arc family. We have learned how to navigate through the maze of resources, agencies, etc. that become part of our everyday lives in caring for a loved one with a disability.

Our family’s personal struggle has been employment. Anyone that knows our family, is aware of our story to find employment for Terrell. We have faced many obstacles in finding the right fit for him. We tried a couple of jobs, but neither were the correct placement. The most challenging part was getting the entities involved to listen to Terrell’s wishes. We eventually were able to find a part-time job for Terrell that he truly loves. The people at his job do not have a background in working with individuals with a disability. They just have a passion for what they do and welcomed him with open arms. The great thing that arose from our employment journey is that Terrell became a better self-advocate. He voiced that he wanted to work close to home and only wanted part-time work. His independent living skills have also increased; he prepares his lunch the night before work and he walks his dog before going to work.

Independent living skills and employment are my passion. When a person has a reason to get up for the day it gives them a purpose in life. We see a difference in Terrell with how he manages his time in preparation for the next day and his conversation with us about his day.

I love that we have agencies that are trying to assist with helping our loved ones find employment. But I think there needs to be more preparation work done with individual businesses that are considering/willing to hire someone

with a disability. In working with Terrell and talking to other families, most businesses do not want a job coach on site. We really need to work on changing this mindset. When informing the business that a job coach will be present, it should be presented as a source of support for everyone involved to have a positive and productive work experience.

Building relationships with businesses needs to happen before presenting potential applicants. We need to learn the needs of each business. As we speak to each business and find out their needs, we should continue to grow the relationship and think of individuals that could be a good fit. Ask the company if there are extra job tasks that are being added to current employees’ workloads that could be removed by hiring someone to take on that task. For example, in an office setting there are many duties that we will put off because of having other job duties that require more time (filing, mail, shredding, database entry, etc.) Putting together these job duties could work great for someone that is looking to work part-time or possibly full-time. Also, teach the companies about the needs of our loved ones and if modifications are needed to be successful. Many times, these changes are very low cost to implement. The biggest obstacle will be to gain the trust of the business and show them the advantages of hiring a person with a disability and the positive difference it can make for their workforce.

I would love to see us all working together to make this happen. For progress to be made we need to build a strong foundation. With all the positive changes that have taken place in our state, I have every confidence that options for living independently and gaining fruitful employment opportunities will continue to rise.

Lines from LindaBy: Linda Brown, president

Jeff, Terrell, Linda & Myles

Brown

SAVE THE DATE for the third annual Big Ideas event at the Inn at Opryland on Saturday, February 15, 2020 from 8:00 am - 4:30 pm. Attendees will leave with “big ideas” on a variety of topics important to

the disability community including employment, education, health, housing, community living and so much more. Keynote speaker Alonzo Kelly will challenge attendees to push their own boundaries and discover the leader that exists within them. There will be plenty of time for networking throughout the day. The conference will end with a reception featuring appetizers, drinks and fellowship. Do you have a “Big Idea” that would impact the future of people with disabilities? If so, be on the look out for our “call for proposals” for the Big Ideas event 2020.

For more information, visit our webpage at: http://www.thearctn.org/Big-Ideas.php

Pushing Boundaries...

a Big Ideas event!

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Light up a Life is The Arc Tennessee’s annual holiday giving campaign that runs through the month of December. If you believe in and support the work that we do, please give someone with a disability the chance to shine by participating in any of the following ways:

• Donate online by purchasing candles here: https://squareup.com/store/the-arc-tennessee/item/light-up-a-life-1

• Use the form on the back of this newsletter to mail in a donation in honor of or in memory of someone close to your heart

• Attend the Holiday Happy Hour Silent Auction with celebrity news anchor Scott Couch on Tuesday, December 3, 2019 from 6-8:30 pm at the Gulch Crossing, 1033 Demonbreun Street, Nashville by purchasing a ticket here: https://www.eventbrite.com/e/light-up-a-life-2019-tickets-74040867227

Your support is greatly appreciated by individuals with intellectual and developmental

www.tndisabilitymegaconference.org

SAVE THE DATE!Thursday & Friday

May 21-22, 2020The Tennessee Disability MegaConference is Tennessee’s largest disability-specific conference for individuals with disabilities, families, and professionals. At the conference, people share the latest information and innovations on many topics including housing, employment, education, health care, recreation and leisure, mental health, and others. Continuing education credits are offered in many categories. People attending make new friends and important connections as everyone works together to encourage the full participation of all people with disabilities!

Highlights include:• Nationally Renowned Keynote Speakers • Interactive/Recreational Workshops • Educational Sessions• Exhibits of Disability Products and Services• Self-advocate Entrepreneur Wares for Sale• Wednesday Night Pre-conference Awards Banquet • Thursday Night Dance or Movie• Breakfast and Lunch Included• Limited Stipends Available for Persons with Disabilities, their Families and Caregivers

For all MegaConference information and updates, visit the website often.

By: Dave Griffin, People First project coordinator

Moving Along

People First hosted a Voter Registration Training where participants learned the “101s” of voting.

We have formed a Transportation Committee that will be developing a survey to see what transportation is available to people across the state, particularly in rural areas. This group will identify ways to address the lack of and problems with public transportation.

New chapters have been formed in Madison and Hamilton Counties and plans are in the works to form chapters in Greene, Franklin and Blount Counties. We now have

eight established chapters and three in the works across Tennessee. If you would like to form a chapter in your area or participate on the Transportation Committee, please call 800-835-7077 x 305 or email dgriffin@thearctn.org.

Voter Training 101!

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Successful Community Program Yields Award-winning Volunteers!Submitted by: Judy Wohlwend, executive director, The Arc Knox County

Continued on page 8

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By: Jennifer Aprea, family engagement coordinatorFamily Engagement Project Updates!

We are excited to share that we have just completed the first year of this project in partnership with the Tennessee Department of Education, and we’ve accomplished so much! Our 2018-19 Annual Report is available on thearctn.org website. Click the “Family Engagement” tab on the right side of the home page to find it.

The TN Dept of Education held a mini-conference in Milan this past summer for educators involved in Special Education and the turnout was awesome with 125 attendees. I presented with Crystal McCarver on Family Engagement and the new 48 hour draft IEP rule.

We have big plans as we move forward into our second year operating this project, including more community conversations in all eight regions of Tennessee. Keep an eye on our social media pages for more information on dates and locations!

The Pathways to the Future mini-conference planning is in full swing. If you are in or near Montgomery County, we would love to have you join us on February 1st at the William O. Beach Civic Hall in Clarksville for a full day of educational sessions for families and individuals with I/DD. Lunch will be provided and we will have fun door prizes for families who attend to win. You can register on the Family Engagement in Special Education – TN Facebook page by clicking on the “Events” tab: www.facebook.com/fespedtn

We continue adding resources for families involved in Special Education on our website page and blog. Our most recent topics include Diploma Options in Tennessee and Using FLMA for IEP Meetings. You can read more at https://fespedtn.blogspot.com and please reach out to me at japrea@thearctn.org if you ever have a topic related to special education that you’d like us to turn into a resource document!

PATHWAYS TO THE FUTUREFamily Mini-conference

Saturday, February 1, 20209:00 am - 4:30 pm

William O. Beach Civic Hall350 Pageant Lane, Suite 201

Clarksville, TN• Focus on school age kids• Presenters from The Arc TN, TRIAD, TN

Department of Education, Family Voices & more

• FREE, lunch provided but please register here: https://www.eventbrite.com/e/the-arc-tennessees-pathways-to-the-future-family-mini-conference-tickets-73835436779

• Funded by a generous grant from the Predators Foundation

for your generous donations!This listing reflects donations received 7/1/19 - 9/30/19. We apologize for any omissions and appreciate omissions

brought to the attention of Gavin Dillinger atgdillinger@thearctn.org or 615-248-5878 x 17.

Glenda BondSharon BottorffDozier CadeSusan CarrKathleen ClintonKaren DownerElisabeth DykensScott FinneyDavid HawkCarrie Hobbs GuidenMr. & Mrs. Charles HobbsMR Foundation of TennesseeDr. Judy ItzkowitzJacqueline KingNikki KlumbNetwork for GoodJ & T VogusYour Cause Corporate Employee Giving ProgramAnn MostollerLexi ShelnuttEmma ShouseCourtney Taylor

People First DesignationJames & Beth Easter

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By: Loria Hubbard, director of programsStudent Led IEP Team Meetings

Many students with disabilities have not participated in their own Individualized Education Program (IEP) Meetings. Students may view IEP Meetings with fear and mistrust. With a little support and training students can lead their own IEP Team Meetings.

Student Led IEPs is a way that students can learn self-determination, self-advocacy and leadership. Research shows that students who lead their IEP Team Meetings are more likely to get job training and/or have a job when they leave high school. An easy worksheet to help your student prepare to lead an IEP Team Meeting is below.

Continued on page 8

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Nick expressed his dreams for the future during his PATH (Planning Alternative Tomorrows with Hope). Supported by Buffalo River Services (an affiliated chapter of The Arc), friends and family, Nick established positive, possible goals. First steps and timelines were identified to begin the process to reach those goals. Nick stated that the PATH made him feel good and he is looking forward to increasing his work hours, making more money and taking a vacation!

The PATH process takes from 2-3 hours. If you would like to schedule a PATH, call 615-248-5878 X 315 or email help@thearctn.org.

unanimously approved the Katie Beckett Program. Tennessee has now joined the rest of the nation in providing this much-needed support system to families. Our next step is working together to make sure we get this program up and running as quickly and efficiently as possible to best serve the families who need it the most. I am honored serve along with The Arc Tennessee’s executive director, Carrie Hobbs Guiden, on the Katie Beckett Technical Advisory Group where we meet with TennCare and other representatives from across the state to help develop some of the details of the Katie Beckett Program in Tennessee.

Katie Beckett was a three-year-old in 1981 who was the inspiration for change in home health care for children with disabilities. She died in 2012 when she was 34.

Beckett in the Bucket! Continued from page 1

Successful Community Program Yields Award-winning Volunteers! Continued from page 5

Student Led IEP, Continued from page 7A student does not have to lead the entire meeting. A good place to start is the student welcoming everyone at the beginning and thanking them for coming at the end. That is a great first step. This helps the IEP Team remember that the meeting is about the student. The important thing is for the student to become a part of the planning for their education and their future.

The Arc Tennessee is available to provide training on Student Led IEP Team Meetings for students, families and educators. There are also resources on our webpage on this and other special education topics (http://www.thearctn.org/Education.php). For information on bringing Student Led IEP Meeting training to your community, contact me at 615/248-5878 X 28.

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So Long, Farewell!By: Peggy Cooper, director of communication

and chapter supportThe time has come to move on. I have been editor of The Arc Connection newsletter for 19 years; this is my last issue because I am retiring January, 2020. I am grateful to have worked with an amazing team, wonderful board members, inspiring families and awesome local chapter leaders, all of whom make our newsletter reading-worthy.

I am pleased to announce that the communication baton is being passed to Dean Fox, who has a background in journalism, so I feel good knowing I am leaving newsletter

matters in expert hands.

While I am a little emotional about leaving it all behind and will miss everyone, I am excited about the future. My husband and I plan on traveling, camping, kayaking, fishing and spending precious time with our grandchildren. As the von Trapp family sang, “So long, farewell, we bid you adeiu!”

Womens Support Group

Girl talk! In September, a small group of women came together in Nashville for the second meeting of the Women’s Support Group of Middle Tennessee. Credit for the original idea to form the group goes to Breonna, a personsupported within the DIDD system, and Roberta, the sensational DSP who was working with her.

The basic premise for forming the support group was to talk about the lack of friends and natural supports that was being experienced, and the thought that many other women living within our system more than likely could be experiencing similar circumstances.

Possible common themes or topics to be discussed include disability, diagnosis, feelings of isolation or abandonment, lack of transportation options, broken homes, dysfunctional family life, failed relationships, feelings of lack of support, lack of independence, and the need for friendships, meaningful leisure and recreation activities, community involvement, and numerous other quality of life issues and concerns.

Staff support to the diverse group has come from Dr. Jenny Mathai and others working within our system, who all take their role as mentors very seriously, and have committed their time to help in any way they can to ensure the success of this support group.

Clearly, the women themselves are learning to lead their own group and the direction it is to take in the future. Judging from the first two meetings, everyone is hopeful that the group will grow, along with friendships, and be a safe place to discuss any issues of importance in their lives.

Other women are invited to participate. Please encourage any you know in the greater Nashville area to join the group. Meetings are held at 10:00 am in the basement of One Cannon Way, on the second Tuesday of every month just before the monthly Focus Group takes place.

SAV

E TH

E D

ATE

S!

Tuesday, February 3, 2020Summit

Wednesday, February 4, 2020Legislative Meetings on the Hill

More information forthcoming!

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Want to

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Send in your h

appenings!FROM AROUND THE STATEInformation from & Activities ofTennessee Chapters of The Arc

Congratulations to the following chapters for placing in our 2019 Membership Campaign by enrolling new members from 3/1/19 through 8/31/19 to increase their base number of members as of 2018. Awards were presented at The Arc Tennessee September board meeting.

1st Place - The Arc Knox County - 85% increase2nd Place - The Arc Cumberland County - 76% increase3rd Place - The Arc Hickman County - 63% increase

The Arc Washington County’s Field of Doom obstacle course fundraiser went off without a hitch on a soggy, muddy morning in May with 175 race participants making their way through muddy corn fields, scaling rain-soaked walls, braving a haunted house, climbing down and running through a murky ditch, crawling through wet sand and more to complete the obstacle course race inspired by Indiana Jones. Top finishers received themed awards and all participants received awesome medals for competing.

The Arc Cumberland Valley had their annual Cruise-In for a Cause fundraiser September 13 that featured a car show and music. Members of Project 22, their young adult social club, sold bottles of water, mini bundt cakes, hats, shirts, and Christmas decorations. They hosted a Conservatorship and Special Needs Trusts workshop on September 28. An artist in residency from Borderless Arts Tennessee conducted a photography project centered around musical instruments on October 12.

The Arc of the Great Smokies hosted an AbleVoices Workshop: Photography for Self-Expression, Empowerment, and Advocacy on October 19 conducted by Jen Vogus.

L: Teresa Grimmett, The Arc Hickman County; Linda Brown, president, The Arc TN; Glenda Bond, The Arc Cumberland County

Members of Project 22 at Cruise-In for a Cause

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The Arc Mid-South hosted several voter registration drives across Memphis, registering fifty-eight voters. The

voter registration drives were a cooperative effort with several other organizations, including Paul Mitchell the School Memphis, The Skinner Center, SRVS, and The Orange Mound Senior Center. They teamed up with the Memphis Redbirds and was the Lipscomb & Pitts Insurance Non-Profit of the August 21st game. They received a portion of the cost of tickets purchased through

their link and everyone who purchased a ticket received a Memphis Redbirds cap. They also recently received a $2,500 grant from the Enterprise Holdings Foundation to support their Life, Education, Training, Skills (LETS) literacy program.

The Arc Rutherford County held a workshop on Basics of Social Security, Conservatorships, Trusts & Much More on September 18th with Melinda Brown of Thomas and Brown presenting.

Members of The Arc Rutherford County

The Arc Williamson County along with Ventures, a collaboration of agencies serving individuals with disabilities in Williamson County, held their annual PATH

to INDEPENDENCE DisABILITY Resource Fair on Saturday, September 28 at the Williamson County Enrichment Center. Over 50 vendors participated, including The Arc Tennessee! They moved offices across the hall in the Williamson County Community Services Building. They have more room, including space for meetings/workshops and we have WINDOWS! The new address is

129 West Fowlkes Street, Suite 143, Franklin, TN 37064.

The Arc Cumberland County Special Olympics games were held September 15 with 48 adults and 30 children participating, supported by more than 250 volunteers from the community. The youngest athlete was 17 months and the oldest was 84 years old! Lisa Davis, who was The Arc TN Self-determination award winner served as parade Grand Marshall. They were pleased with 2nd place in the 2019 Membership Drive. An incentive of a paid 2020 MegaConference trip was offered to the member who brought in the most new members. Structured Athletics finished up summer bowling and kickball during the 3rd quarter of the year.

Fall 2019

545 Mainstream Drive, Suite 100Nashville, TN 37228-1213

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The Arc Tennessee, 545 Mainstream Drive, Suite 100, Nashville, TN 37228-1213