ORGANIZATION SPOTLIGHT

Tennessee Disability Pathfinder

BY ELIZABETH TURNER

The Vanderbilt Kennedy Center (VKC) was founded in 1965 as one of 12 original Intellectual and Developmental Disabilities Research Centers (IDDRC). President John F. Kennedy established the IDDRC network to advance the diagnosis, prevention, and treatment of intellectual and developmental disabilities (IDD).

NO BARRIERS: Pathfinder staff work with individuals of all ages, with all types of disabilities, and in all languages spoken, at no charge.

Today, the VKC's programs and activities are broad, including providing support to Vanderbilt University and Vanderbilt University Medical Center researchers who strive to understand typical and atypical development; training tomorrow's educators and disability service providers; developing model service programs and interventions; and disseminating information to impact communities and public policy.

One of the VKC's innovative and highly impactful programs is Tennessee Disability Pathfinder ( vkc.vumc.org/vkc/pathfinder), a statewide disability information and referral service. Pathfinder assists people with disabilities, their families, educators, and other professionals to find and access resources, support, and services within the state. Pathfinder staff work with individuals of all ages, with all types of disabilities, and in all languages spoken, at no charge. Pathfinder serves within the Community Outreach arm of the Community Outreach arm of the VKC's University Center for Excellence in Developmental Disabilities (VKC UCEDD) ( vkc.vumc.org/vkc/ucedd) and is made available to Tennesseans and residents of surrounding states who are willing to travel to receive disability services. It was first established in 1997 as the Tennessee Disability Information and Referral Office, as part of a flagship partnership with the Tennessee Council on Developmental Disabilities ( tn.gov/cdd.html), a state agency that leads initiatives to improve disability policies and practices, educate policymakers and the public about promising practices in the field of disability services, and facilitate collaboration and coordination across public and private organizations.

"Tennessee's disability community told us that it was hard to find information about services, which led us to launch Pathfinder in 1997," said the DD Council's executive director Wanda Willis. "Pathfinder has become a key resource in our state, including to the Latino community through its multicultural program." Over the years, Pathfinder's services and staff have grown with subsequent partnerships and with additional grant funding agencies within Tennessee, including the Tennessee Departments of Education, Intellectual and Developmental Disabilities, Health, and Human Services/Vocational Rehabilitation.

"Tennessee Disability Pathfinder has been a vital service for so many Tennesseans with disabilities and their families in the years since its inception, and our ability to serve others has only improved with the continued support of so many valued disability advocacy and service partners," said VKC UCEDD co-director Elise McMillan, J.D. Pathfinder employs a diverse staff that includes professionals, family members, and/or individuals with disabilities with many years of experience working in the disability field. Pathfinder is currently led by program director Megan Hart, M.Ed. McMillan serves as Pathfinder's faculty director.

INFORMATION AND REFERRAL SERVICES ACROSS THE LIFESPAN

Perhaps the most utilized of NO BARRIERS: Pathfinder staff work with individuals of all ages, with all types of disabilities, and in all languages spoken, at no charge. Tennessee Disability Pathfinder's services is its expansive clearinghouse of disability organizations and disability-related services across the state of Tennessee, both within and outside of Vanderbilt's network. Through a helpline and online resources directory, Pathfinder connects individuals to appropriate community resources, as close to home as possible.

Perhaps the most utilized of Tennessee Disability Pathfinder's services is its expansive clearinghouse of disability organizations and disability-related services across the state of Tennessee, both within and outside of Vanderbilt's network. Through a helpline and online resources directory, Pathfinder connects individuals to appropriate community resources, as close to home as possible.

Pathfinder staff typically assist approximately 2,000 individuals per year who reside in nearly 95 Tennessee counties. Some of the most requested needs usually include financial assistance, Family Support Program, interpretation and translation assistance, health care services, and housing information. Resources for children ages 112 have been the most sought-after, and autism spectrum disorders are the disability group most represented by individuals seeking assistance. "Most often, Pathfinder is not the first point of contact for individuals that call or email us, so our staff's personal and professional experience plays an important role in providing one-on-one assistance for each person to be successful in determining and accessing the most appropriate resources to meet his or her needs." said Hart.

SIGNING ON: Pathfinder staff conduct a Zoom meeting during the Covid-19 crisis. The staff typically assist approximately 2,000 individuals per year who reside in nearly 95 Tennessee counties.

Those looking for information have the option to speak with a Tennessee Disability Pathfinder staff member over the phone at 1-800-640-4636. The toll-free number is monitored by Pathfinder information and referral coordinators Karen Mevis and Linda Brown, both longtime disability advocates and parents of adult children with disabilities who are eager to help meet the needs of families much like their own. Those who would prefer to search for information on their own may also access the resources library at their convenience. The resource library ( vkc.vumc.org/vkc/pathfinder/library), maintained by Pathfinder's database and website coordinator Carvis Russell, includes valuable information sorted by theme. For a more comprehensive search, individuals can search the resource directory ( vkc.vumc.org/pathsearch) by keyword, county, or region. The Pathfinder website also houses an updated community calendar ( vkc.vumc.org/pathcal2) with disability-related events across the state. Events often include disability organization support group meetings, workshops, recreational activities, fundraisers, and more. Pathfinder works closely with other VKC UCEDD programs, including Transition Tennessee ( transitiontn.org), Tennessee's online home for training and resources on preparing students with disabilities for life after high school. Certain services and supports available to Tennessee children and adolescents with disabilities expire once the adolescent graduates high school, or ages out of the programs, whichever comes first. Pathfinder works alongside Transition Tennessee to provide parents and selfadvocates with helpful information on additional forms of support available to adults with disabilities. "Pathfinder helps students and families navigate their transition to adulthood successfully," said Transition Tennessee educational consultant Rachael Jenkins. "Transition Tennessee includes Pathfinder in the Supports and Partnerships section ( transitiontn.org/supports-partnerships) of their website, highlighting how Pathfinder can be a resource during the transition process. Pathfinder has even presented at Transition Tennessee's annual conference, and participated in their virtual transition fairs for parents." 

TRAINING OPPORTUNITIES, IN PERSON AND ONLINE

In addition to providing service information to Tennessee families, Tennessee Disability Pathfinder also offers regular education and training opportunities. In a typical year, Pathfinder staff members travel the state to provide free in-person workshops covering topics that are important to families of children with disabilities, such as financial assistance resources and disability supports. These workshops often are co-sponsored alongside regional community organizations and welcome other local groups who may be able to provide additional assistance to families in their county after Pathfinder staff return to Nashville. Despite the COVID-19 pandemic, Pathfinder has been able to continue their trainings and workshops by going virtual, thereby expanding the number of people served by recording their workshops over Zoom and allowing families to re-visit archived webinars on their Trainings page ( vkc.vumc.org/vkc/pathfinder/trainings). Also linked on the Trainings page is a broader VKC UCEDD Online Learning platform ( ucedd.vkclearning.org) (creation of a free profile required), with archived Pathfinder webinars, as well as online courses on IDD Toolkit training for healthcare professionals and advocating for your child's special education needs.

ACROSS THE LIFESPAN : PARENT TIPS AND RESOURCES

Tennessee Disability Pathfinder staff members Megan Hart, Karen Mevis, and Linda Brown compiled the following list of parent tips and resources, categorized by age group, when it comes to seeking assistance for an individual with a disability:

EARLY INTERVENTION & YOUNG CHILDREN

• If your child was not referred to the Early Intervention Program ( benefits.gov/benefit/636) at the time he/she was diagnosed with a disability, it's important to contact the agency in your state that oversees the program that assists families in getting appropriate information and pediatric therapies from birth until the child is age three. At that point, the child is referred to their home county's school system, and they could be eligible to attend preschool free.

• Parents need to begin to understand that their role as primary advocate for their child with a disability is paramount to that child's life.

• Seek out family-network organizations and learning opportunities for becoming an advocate for your child, such as The Arc ( thearc.org) state and local chapters, Partners in Policymaking program, Family Voices ( familyvoices.org), and disability-specific organizations such as a local chapter of the Autism Society ( autism- society.org/about-the-autism-society/affiliate-network), Down Syndrome Association, United Cerebral Palsy (UCP) ( ucp.org), etc.

SCHOOL AGE

• Connect with a Parent Training and Information Center ( parent- centerhub.org/find-your-center) to learn aboutspecial education rules and procedures, especially areas which will pertain to your child's needs.

• Find an experienced, trained advocate to join you at school team meetings, when your child's Individual Education Plan (IEP) is being created, modified, or updated.

• Talk with your child and others about their loves, abilities, and successes. Expect their success and help their teachers see them as successful, so your child will see a place for themselves in the workforce and in the community.

TRANSITION AGE

• It is never too early to start learning about Future Planning ( futureplanning.thearc.org) topics such as ABLE savings accounts ( able-now.com), Special Needs Trusts, and Supported Decision-Making ( supporteddecisionmaking.org).

• If you or your child is considering further education opportunities, look into inclusive higher education programs, Disability Services offices at colleges and universities, and potential scholarships or financial aid.

• When researching employment opportunities, consider potential resources such as your state's Vocational Rehabilitation services, American Job Centers, and Ticket-to-Work, just to name a few.

• To continue instilling self-advocacy and independent living skills in your child, consider connecting them with a Center for Independent Living ( acl.gov/programs/centers-independent-living/list-cils-and-spils) for peer support and recreational activities for social and peer engagement. Examples include Easter Seals ( easterseals.com), Special Olympics ( specialolympics.org), and/or Next Chapter Book Club ( nextchapterbookclub.org).

• Narrow the focus with your child and take a deep dive into the program(s) and the path your child may choose. Ask the hard questions like, how long is the wait list?

ADULTHOOD

• Update the future plan together with new information and new goals.

• Look into housing options, long-term support services, and other resources your child may need to live a meaningful life.

• Get organized: are your finances, paperwork, and will in order? If you have not already, it is important to get things in order so that an inheritance from you or a well-meaning relative doesn't cause a person who is dependent on Supplemental Security Income (SSI) ( ssa.gov/ssi) and Medicaid ( medicaid.gov) to lose those government programs? Assets greater than $2,000 can cause that to happen.

AGING

• Take time to ask yourself and your loved one some tough questions: What is important to the person with a disability? How is that communicated to others? Is your loved one with a disability at higher risk for certain medical issues or disease that prompt the need for additional conversations, actions, or planning? When it is needed, who will be the back-up person when the parent/caregiver passes away or becomes incapacitated?

• Connect with an Aging & Disability Resource Center ( acl.gov/programs/aging-and-disability-networks/aging-and-disability- resource-centers) for assistance in connecting with potential services and information about Medicare through SHIP ( shiptacenter.org).

OTHER LIFESPAN RESOURCES

• State Council on Developmental Disabilities ( acl.gov/programs/aging-and-disability-networks/state-councils-developmental-disabilities): The 56 Councils across the U.S. and its territories work to address identified needs by conducting advocacy, systems change, and capacity-building efforts that promote self-determination, integration, and inclusion. Key activities include conducting outreach, providing training and technical assistance, removing barriers, developing coalitions, encouraging citizen participation, and keeping policymakers informed about disability issues.

• Protection & Advocacy System ( acl.gov/programs/aging-and-disability- networks/state-protection-advocacy-systems): Dedicated to the ongoing fight for the personal and civil rights of individuals with disabilities by helping them navigate the legal system to achieve resolution and encourage systems change and to ensure that they are able to exercise their rights to make choices, contribute to society, and live independently.

• University Center for Excellence in Developmental Disabilities ( aucd.org/template/page.cfm?id=667): Centers work with people with disabilities, members of their families, state and local government agencies, and community providers in projects that provide training, technical assistance, service, research, and information-sharing, with a focus on building the capacity of communities to sustain all their residents.

MULTICULTURAL OUTREACH FOR SPANISH-SPEAKING FAMILIES

Tennessee Disability Pathfinder is proud to serve members of the state's growingly diverse communities through its Multicultural Outreach Program ( vkc.vumc.org/vkc/pathfinder/multicultural). The Program's mission is to help those from culturally and linguistically diverse backgrounds access disability resources and information. To address the needs of Tennessee's growing multicultural population, staff members provide cultural awareness, education, training, and one-on-one help to non-English-speaking Tennesseans. Regardless of nationality or language spoken, free assistance for individuals with disabilities and their families is just a phone call away at (800) 640-4636 or (615) 8759850.

HERE TO HELP: Program Director Megan Hart is part of a diverse staff with many years of experience working in the disability field.

A vast majority of the multicultural services requested come from members of Tennessee's Spanishspeaking population, so Pathfinder offers Camino Seguro, a statewide online database dedicated to disability resources offered to the Hispanic community with bilingual service providers. COVID-19 has disproportionately affected Tennessee's Hispanic population, so Camino Seguro has been a valuable asset for the community. In fact, Nashville Mayor John Cooper's Metro Nashville COVID-19 Task Force enlisted the help of statewide Multicultural Outreach coordinator Angelica Deaton to provide information to Spanish-speaking Nashvillians during his regular coronavirus briefings earlier in the year. Since then, Camino Seguro has welcomed another bilingual Multicultural Outreach coordinator, Martha Lopez, to the team.

Pathfinder and its Multicultural Outreach staff have worked closely with the Vanderbilt Kennedy Center's Treatment and Research Institute for Autism Spectrum Disorders (VKC TRIAD) ( triad.vumc.org) to provide translation assistance for its Families First workshops for parents of young children with an autism diagnosis. Deaton and Lopez have been instrumental in providing Spanish translations of autism supports ( vkc.vumc.org/vkc/resources/autism), including manuals and tip sheets for families seeking assistance for their child with autism, from early childhood onto transition age and early adulthood.

"TRIAD provides services and resources across Tennessee, but without the Pathfinder expertise and community integration, we would find it much more difficult to effectively serve and support the individuals and families who are non-English speaking, and who rely on us," said VKC TRIAD director A. Pablo Juarez, M.Ed., BCBA.

PATHFINDER IN THE FACE OF COVID-19

The novel coronavirus hit the state of Tennessee hard in early March 2020, closing schools and businesses indefinitely, while the city of Nashville moved into a "Safer at Home" public health order.

For Middle Tennessee, COVID-19 came like a one-two punch after a deadly EF4-scale tornado ripped through parts of East Nashville and residential neighborhoods in the cities of Mt. Juliet, Lebanon, and Cookeville in the early morning hours of Mar. 3.

In the midst of the chaos, Tennessee Disability Pathfinder worked quickly with fellow Vanderbilt Kennedy Center staff members to create a dedicated COVID-19 and Disaster Relief Resources page ( vkc.vumc.org/vkc/pathfinder/corona), providing Tennesseans with contact information for disaster relief organizations as well as links to important resources such as the Centers of Disease Control. The page also features plenty of sharable videos, tip sheets, and print materials for individuals with disabilities, many of which were created by the Vanderbilt Kennedy Center and the Monroe Carrell, Jr., Children's Hospital at Vanderbilt, including visual supports on proper handwashing ( vkc.vumc.org/assets/files/resources/visual-supports-handwashing.pdf) and social stories about social distancing ( vkc.vumc.org/assets/files/resources/Social%20Distancing%20Social%20Story.pdf), intubation ( iddtoolkit.vkcsites.org/wp-content/uploads/intubation-prep-tag.pdf), and wearing a mask ( vkc.vumc.org/assets/files/triad/Wearing_a_Mask_During_COVID-19_adj.pdf). In the months following, Pathfinder has continued to add additional information as needed from city and state disability organizations covering timely topics such as knowing your rights to healthcare under the law, at-home learning resources, and Tennessee unemployment insurance information.

Tennessee Disability Pathfinder has become such a vital information tool in the fight against COVID-19, it was recently awarded a special grant (beginning January 2021) from Commission on Aging and Disability to continue providing support and creating additional coronavirus resources for aging and disabled populations.

SOCIAL MEDIA AND IN YOUR INBOX

For those who like to keep up with up-to-the-minute information, Tennessee Disability Pathfinder has an active presence on social media, including Facebook and Twitter. Facebook users can access, like, and follow Tennessee Disability Pathfinder (@TennesseeDisabilityPathfinder) for regular updates on upcoming Pathfinder trainings, news from disability partners, and links to new products and resources. Likewise, Pathfinder may also be found on Twitter at @tnpathfinder. For Spanish-speaking families, Pathfinder also offers Camino Seguro (@caminoseguroTN), with frequent Pathfinder-related posts written in Spanish. The page is maintained by Pathfinder's Multicultural Outreach coordinators. Pathfinder also produces a monthly enewsletter, The Compass. Each month features articles produced by Pathfinder staff on a new topic. Click familypathfinder.us3.list- manage.com/subscribe?u=7ec625dc46decdfb71336acd4&id=cdad56036a to subscribe to The Compass. Archived editions of The Compass may be found by clicking us3.campaign-archive.com/home/?u=7ec625dc46decdfb71336acd4&id=cdad56036a. For more information about Tennessee Disability Pathfinder, visit the Pathfinder website at vkc.vumc.org/vkc/pathfinder, or contact program director Megan Hart at megan.hart@vumc.org •

ABOUT THE AUTHOR:

Elizabeth Turner is the associate director of Communications and Dissemination for the Vanderbilt Kennedy Center (VKC). In addition to being a content creator, she also serves as lecture and special event coordinator and social media administrator for the VKC's Facebook and Twitter accounts. She's proudly been a part of the VKC staff for eight years, before which she was a journalist and section editor for a newspaper in the Upper Cumberland region of Middle Tennessee. She may be reached at elizabeth.turner@vumc.org.