In this light at the end issue of the tunnel

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in this issue:

light at the end of the tunnel

NUMBER 78 | jUly 2015

A publication of the Tennessee Council on Developmental Disabilities

BREAKING GROUND

table of contents

2 life in the Moment: A Sister's Perspective 3 yes, Virginia, There IS a light at the End of the Tunnel:

An Employment Success Story 5 The HCBS Settings Rule 7 The CIl and Metro Schools Outreach Program 9 25 More Partners Grads join the Tennessee Partners Network 10 Partners 2015 Reunion 11 jason Oliver Tells His Story to Help Others 13 Seek and ye Shall Find? 15 Peer-to-Peer Supports:

Family Voices TN Program Parent 2 Parent Grows Up 17 TN Spotlight 18 Save the Date: International Parenting Conference

Tennessee Council on Developmental Disabilities, Authorization No. 344067, November 2014, 32,400 copies.

This public document was promulgated at a cost of $.45 per copy.

Cover photo: Left to right: Adrianna Martinez, Gabby Shankles, Chris Petulla and Brian Nation. Photo by Amy Petulla.

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BREAKING GROUND

life in the MoMent:

A SISTEr'S

PErSPECTIvE

by Emily vanGilder

My sister, Sarah, is very similar to any typical, 19-year-old girl. She loves dancing in her room to loud music, she fights with her siblings, and she has a crush on every single cute guy she sees. However, Sarah has something that most other people don't have: an extra chromosome.

My sister has Down syndrome. When I was a little girl, I didn't even know what Down syndrome meant until my mom took me to a workshop for parents with children with Down syndrome. We walked into the room and I saw many children with slanted eyes, tiny noses and ears, and tongues too big for their mouths. I simply said to my mother how unfair it was that all of these children looked like Sarah and none of them looked like me!

My mom then explained to me how my sister is different, how she has special needs, and how she does things a little slower than everyone else.

Having a sister with Down syndrome has shaped me into the person I am today, because Sarah teaches me the things that matter most in life. Everything that I need to know in life, I learned from her.

Sarah lives in the present. She's always focused on what is happening right there and then, and doesn't always worry about the past or the future. I often find myself worrying about what I need to get finished or what will happen in the future. I also worry about bad things that have happened in the past. Whenever something doesn't go Sarah's way, she just says "Oh well!" and moves on. She's a wonderful reminder to just relax and take life one day at a time.

But she can also be the most stubborn person I've ever met, and sometimes living in the moment means that she must finish her movie before she agrees to do anything else. However, because Sarah really savors what is happening in this present moment, she sees things that others do not.

She knows what her jobs are and gets them done. When the dishes are clean she empties the dishwasher without being told. She notices when things are out of place and puts them away. She likes to help out whenever she can.

Sarah can create a happy moment in a mere car ride home by blasting Lady Gaga and giggling the entire time. She is absolutely the best cure for a bad day. She sees through any mask I put on, and she knows how I'm feeling whether I tell her or not.

Whenever I come home in a bad mood or I'm stressed or sad, my sister simply looks at me and says, "it'll be okay Emmie".

She has taught me not to get so caught up in the hard things in life. If I fail a test or lose a friend, Sarah is there to give me a quick hug and cheer me up. If she sees someone upset or angry, she's the first to comfort that person. When Sarah was a little girl, she ran up to a complete stranger, hugged him, and told him that everything will be okay. This stranger told us that he was having a difficult time being separated from his family overseas. He was amazed that this tiny little girl could see his pain and comfort him, without even knowing him.

Sarah is a pat on the back, or a high five when you do well. She is there for anyone, to remind them that life is difficult sometimes, but everything always works out.

Having a sister with a disability can be difficult. I sometimes find myself getting embarrassed because people giggle or point fingers. I wonder, "How can they laugh at this wonderful person standing before them?"

The most important lesson I have learned from my sister, Sarah, is to be yourself. Whether she's dancing at the dinner table, or playing tag while we're in the mall, or making funny faces in the mirror, Sarah truly knows how to be herself.

She's the one teaching me how amazing I am and that I need to love myself. Sarah looks up to me so much and she's so proud to have me as her sister, that she sometimes tries to be just like me. The truth is, Sarah has such self-confidence that I'm the one striving to be more like my amazing big sister!

She cannot speak well, or understand everything that is going on, but she's the most loving, happy person you'll ever meet. As her sister, I feel that it's my responsibility to be sure she knows how special she is, and how much everyone loves her. I try to tell her that I love her every day, but she's usually the one telling me first!

I have a favorite quote from Dr. Seuss: "Today you are you, that is truer than true. There is no one alive that is youer than you!" There are three valuable life lessons I've learned from Sarah: live in the present and savor the moment; don't stress too much because everything will be okay; and when someone points a finger and laughs at you, remember to be true to yourself, because you're amazing just the way you are.

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BREAKING GROUND

yes Virginia

there is

by Amy Petulla Photos by Amy Petulla

C

hris Petulla wanted basically the same things everyone else his age wanted: to go to school where his siblings went, to be a part of his church community, to participate in extracurricular activities and to eventually have a job. He did not see his Down syndrome as a barrier to these goals.

Unfortunately, some adults who did not even know him were not so enlightened, which made his path more difficult. But for every uninformed person who insisted on making the path rockier, there thankfully was a forwardthinking spirit to help smooth it out.

Like many families of young people with disabilities, Chris's folks traded any thoughts of a "Most Popular Parents" ribbon for a figurative pair of boxing gloves, to make sure he got the education he needed in the company of his peers. They changed churches to attend one where he was welcomed in the religious ed classes. They sought out after-school programs where he could thrive, like the theatre programs at Chattanooga Theatre Centre and St. Luke's United Methodist Church, and the show choir at the Chattanooga School for the Arts & Sciences. And they thanked God for the arrival of several angels along the way, most notably paraprofessional Beth Anne Biddle and

teacher Shari Owens, who both offered up their creativity and time to make this journey with Chris.

And bit by bit, the payoffs from this incredible sojourn began to appear. Performance skills led to a work-study program as The Doctor of Laughter at Siskin Hospital, a job based on Patch Adams, who later wrote Chris to congratulate him on the work he was doing. It also led to some modeling jobs and extra parts in a few movies. Chris has recently signed up with the same talent agency that represents Lauren Potter, better known as "Becky" on Glee.

volunteer work at Siskin and at The Creative Discovery Museum gave him experience that led to a paying job with Food Lion, where his bosses, coworkers and customers all loved him. Unfortunately, Food Lion pulled out of Chattanooga less than a year after he began there, so like many people with disabilities, he found himself unemployed at high school graduation. Chris, however, had already planned to attend a vocational program at the TN rehabilitation Center in Smyrna after high school, so while his friends were all off at college, he likewise spent a year in a residential educational program, preparing for future employment in the food services field.

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BREAKING GROUND

Graduation from TrC, however, did not result in an immediate job. Instead, he spent months waiting for yet more paper testing that did not take into account any of his recommendation letters or past performance. The discouraging recommendation was that, despite successfully holding a paying job with no supports before, Chris was only suited for an enclave (workshop) type job.

rather than concede to this recommendation, Chris requested that his job placement services be switched to Orange Grove.

components so quickly. In short order, Chris has become a part of the team, utilizing the Chattanooga Area regional Transportation Authority Care-A-van service to travel to his job Monday through Friday. He does such a good job, the store has received multiple feedback responses through Moe's website, praising Chris. In fact, this trial employment was so successful, Moe's has gone on to hire employees with disabilities at other Chattanooga stores.

Moe's has been a shining example of a win-win partnership. Just ask their customers!

a Light at the end of the tunneL:

an EmploymEnt SuCCESS Story

He was sent to several worksites to allow Orange Grove to evaluate his job skills, and in fact was offered a job by one of these sites. However it was not in his chosen field of food service and would not have afforded him much customer interaction, so he turned that one down. The problem was that most food service jobs require employees to be able to do all jobs, including operating the cash register, and he had not yet been trained to do that.

Amy Petulla is Chris's mom, an author, mediator, retired attorney, owner of Chattanooga Ghost Tours, and a graduate of the TN Partners in PolicymakingTM Leadership Institute.

Then along came Moe's. Moe's Southwest Grille in Chattanooga had just begun exploring the idea of working with Orange Grove to hire an employee with disabilities. Chris' caseworker quickly realized that it would be a perfect fit for Chris. Marshall, the manager at Moe's in Hixson, was seeking an employee to be the "dining room ambassador", to chat with guests, keep the area clean, stock the salsa bar, and of course shout their signature, "Welcome To Moe's!" whenever a guest entered. Chris' strong social skills and attention to detail were just what was needed!

While the initial plan was for Orange Grove to continue supervising as he learned the job, after about a week they were able to pull back, because he grasped all the

Chris Petulla and Moe's general manager, Marshall Watne.

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BREAKING GROUND

thE hCBS SETTINGS

rULE by lauren Pearcy

In January 2014, the Centers for Medicare and Medicaid Services (CMS) issued a final rule outlining requirements for home and community-based service (HCBS) settings. This federal rule will impact Tennessee's HCBS longterm services and supports programs: CHOICES and the 1915c Waivers (also known as "Department of Intellectual and Developmental Disabilities Waivers" or "DIDD Waivers") that serve people with intellectual disabilities. The final rule is known as the "HCBS Settings rule".

The intent of the rule is to enhance the quality of life for people receiving home and community-based services that are reimbursed by Medicaid by ensuring that individuals have full access to community living and are spending time in "integrated settings", meaning alongside people without disabilities. In other words, the rule seeks to make sure that people with disabilities are not isolated or controlled. Instead, services must be provided in a way that ensures people with disabilities are afforded the same rights and freedoms as everybody else.

WHO WILL THE HCBS SETTINGS rULE AFFECT?

Tennessee's Medicaid agency, the Bureau of TennCare, is the lead state agency and point of contact for the HCBS Settings rule because TennCare oversees the two programs that provide HCBS: CHOICES and 1915c Waivers. These programs are administered by the following entities:

? Managed Care Organizations (MCOs) in Tennessee (AmeriGroup, BlueCare, United Health Community Care) administer the CHOICES Program for adults who have a physical disability and people who are over 65 years old; and

? DIDD administers the state's 1915c waivers for people with intellectual disabilities.

Therefore, the initial review of the new HCBS Settings rule, and demonstrating to CMS that the state is in compliance with the new rule, primarily affects TennCare, DIDD, all three MCOs, and residential and day program HCBS provider agencies across the state.

While the analysis and the implementation of the rule will be driven by all the groups listed above, ultimately, and most importantly, this rule will affect the individuals receiving residential and day services through CHOICES or the DIDD waivers, in ways that are intended to support and enhance their quality of life in the community.

A SUMMAry OF THE HCBS SETTINGS rULE

For the first time, CMS defines the requirements for home and community-based settings. This means that the rule is focused on the settings in which services are provided (i.e., where does the person live and spend their day?) in an effort to make sure people receiving HCBS are supported in a way that allows them to live independent and fulfilling lives alongside people without disabilities. Historically, people with disabilities had to live in institutions to receive the support they needed. This rule seeks to ensure that home and community-based services do not feel like institutional services to the people who receive them.

A related Person-Centered Planning rule was released simultaneously with the HCBS Settings rule but went into effect immediately in March, 2014. Per this rule, CMS defines person-centered planning requirements for home and community-based services. Unlike the settings rule, the person-centered planning rule is focused on the planning of the services provided (i.e., Is the individual getting the right services? Does the person receiving the services get to direct the planning process?) The person-centered planning rule specifies that the service plan must be developed through a person-centered planning process. Tennessee is already using personcentered planning, but now the state is re-educating and re-emphasizing this process across all of Tennessee's programs to ensure that the expectations are fully met.

Further, the person-centered planning rule says that the plan must address both long-term services and supports and health needs. In the past, health needs have not been emphasized as part of the service plan. The intent of this rule is to make sure that support coordinators are looking at the person's needs more holistically to help prevent gaps and to connect services where appropriate. For

For more details on these components and others listed in the remainder of the article, please visit tenncare/topic/transition-plan-documents-for-new-federal-home-and-community-based-services

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