Boling Center for Developmental Disabilities CAC

Boling Center for Developmental Disabilities CAC

March 30, 2016 Agenda

Note from Ace: FONT

11:30am: Welcome and Introductions

Melvin Jackson, CLEE, CAC Vice Chair
Janice Craven, self-advocate, MCIL (on behalf of Sandi Klink)
Marian Bacon, new CAC member
Kate McDonald, parent, DRT
Gina Brady, parent, DRT
Robin Goddard, parent, new CAC member
Ginger Walton, parent, CAC Chair
Ace Madjlesi, advocate, CAC Secretary
Malissa Duckworth, BCDD (on behalf of Belinda Hardy), parent
Cindy Gardner, Special Guest, Special Needs Law Center
Jenness Roth, parent, BCDD
Fred Palmer, BCDD
Judy Brooks, BCDD, UCED Little Rock
Patrick Helper-Ferris, self-advocate, new CAC member
Alicia Cone, DD Council
Sandra Hawkins, Mid-South ARC

11:35am: Approval of Oct. 30, 2015 Minutes

Minutes passed and are attached to today’s email.
For copies of past meeting minutes, email .

11:40am: New Business

Welcome New Members!
Marian Bacon, former MCIL employee, self-advocate with multiple disabilities, sits on several boards.
Patrick Helper-Ferris, has used a wheelchair since an accident in 2010. Also a member and volunteer with Mid-South Peace & Justice Center.
Robin Goddard, parent of 9 children, many of whom are adopted and have multiple disabilities.
New Member Overview of Boling Center and CAC, Dr. Palmer
Boling Center is a University Center for Excellence in Developmental Disabilities (UCEDD). There is at least one UCEDD in each state. UCEDDs were formed by The DD Act, along with DD planning councils and other administrative bodies for each state. The developmental disability network in TN is comprised of 4 entities: Boling, Vanderbilt Kennedy Center, Disability Rights TN, and the DD Council and is very well-networked. This network has worked closely on a variety of issues, including transition, employment, and disaster preparedness. The function of the Boling CAC is to give advice, review strategic plans, review reports, and progress towards goals, and to generally ensure community representation and prevent the Boling Center from becoming “an ivory tower.”

For more information, please visit

Ace and Elizabeth will schedule an introductory lunch for new CAC members and officers. Details TBD.
Upcoming Officer Elections
Nomination Committee: Ace, Dr. Palmer, and Ginger
Please send any nominations (you can even nominate yourself!) to Ace at
Ginger: “Support from Boling is phenomenal,” so don’t be intimidated about officer responsibilities.
Copy of by-laws and officer responsibilities is on the website.

Feedback for Boling Social Media
Check out Boling social media and contact Elizabeth () if you have any feedback.
Facebook page
Twitter: @boling_UT
You can also give feedback about the website directly from the site. Navigate to and then click on “Rate Our Website” under Quicklinks.
Cindy Gardner, Special Needs Law Center: ABLE Act in TN
Partner at Special Needs Law Center, which specializes in conservatorships and special needs trusts (i.e., financial planning for people with disabilities).
In 2006, down-syndrome association of parentsbegan lobbying to expand the “$2000 limit” (i.e., an individual with a disability cannot qualify for SSI and TNcare if they have over $2000 in assets/resources).
From 2006 – 2014, the ABLE Act was debated in Congress.
Starting in 2016, TN is one of the first states to enact legislation implementing the ABLE Act.
TN already offers “529” accounts, which are education-specific accounts managed by the TN State Dept. of Treasury.
ABLE accounts are 529a accounts and are comparable to 529 accounts in that they are also managed by the TN State Dept. of Treasury.
An ABLE (529a) account can be used for any “QDE” (Qualified Disability Expense) and not just education.
The current 529a maximum per year is $14000, which is also the gift tax exclusion limit. That amount is set by the IRS and is subject to change based on IRS regulations.
529a accounts grow tax-free up to $100,000.
Once a 529a account reaches the $100,000 limit, the individual’s SSI is suspended until they drop below $100,000. However, the individual’s TNcare coverage is not affected.
529a funds can be contributed by family, friends, community members, or individuals themselves.
Like a retirement account, 529a accounts will be investedin a range of mutual funds, as facilitated by the TN State Dept. of Treasury. People with a 529a account will be able to invest in the same range of mutual funds as 529 accounts, which is considered an excellent program. Account-holders will be able to choose low-risk, low-interest (or high-interest, high-risk) funds.
You can have funds automatically drafted from paychecks into a 529a account.
ABLEtn.gov
Anticipates ABLE going live in TN summer 2016.
Eligibility requirements MIGHT be expanded from onset of disability before age 26 to onset of disability before age 46.
Like all personal funds, 529a accounts are subject to the “Medicaid payback provision.” I.e., when a person passes away, if they have received needs-based programs during their life, the state can claim against their estate after their death.
(The State will not make a claim if you die before age 55.)
An individual does not need a lawyer to set up an ABLE trust (as opposed to a first-party special needs trust). You can go to the website and set it up yourself. (But you still might be interested in first party special needs trust, or a “whoops trust”.)
Have heard things like “I don’t want my kid to go to work because I don’t want them to lose their benefits.” The ABLE act is the solution for this.
Is the ABLE account transferrable (for example, to an heir)?
You can roll over a 529 to a 529a, roll a 529a to 529, or multiple 529 into a 529.
Does a person have to be SSI-eligible to be eligible for 529a?
Have to have a disability certificate, but not sure
If age is raised from 26 to 46, the plan may expand to SSDI-eligibleindividuals.
Dr. Palmer: The Boling sees many kids at their “first diagnosis,” so Boling may want to have a system in place to ensure that families are made aware of the ABLE act when they receive a diagnosis.
Would like advice from CAC as to how to disseminate information on the ABLE act.
Possibly invite TN State Dept. of Treasury to educate BCDD staff and CAC members / train “Navigators” to help families navigate ABLE act legislation and establish 529a accounts.
The account will live within the TN State Dept. of Treasury, who charge an administration fee of 35 cents per $1000.
You don’t have to use TN’s just because you live here. You can use another state’s plans so there will be competition among the states about who has the best one. It can also travel with you if you move.
How accessible are the funds? Can you touch them?
The intention is for the account to grow, but unclear how accounts will be restricted. For example, there may be limits on the number of withdrawals made within a year.

12:30pm: Agency Reports / Announcements

Disability Rights TN (Gina Brady)
West TN is still transitioning with staff.
State-wide meeting has led to collaboration with Red Cross on disaster preparedness. For example, a partner in East TN went with Red Cross to assess accessibility in regards to a recent apt building that caught fire.
West TN seems to have less participation, compared to East TN and Middle TN. They are hoping to expand West TN participation, specifically with regards to upcoming Red Cross trainings.
MCIL (Janice Craven)
MCIL director Sandi Klink is traveling to a joint meeting of the DD network and Independent Living network.
STEP
no update – Fatima Ellis Clark is the new West TN director.
CLEE (Melvin Jackson, for Aaron Kohring)
Continuing to work on self-advocacy and transition with Tipton County students.
41 students at Brighton High School and 11 interns with Project Search
CLEE is working with new school systems as well: Arlington Community Schools, Haywood County Schools, and Stewart County Schools
Transition planning and assessment training with TN Dept. of Education
In March, they had 15 educators in Savannah, TN (Hardin County).
They will be in Humphreys County in April and Carrol Count in January.
Transition planning overview:
student participation in IEP meetings
age-appropriate transition assessments
measurable post-secondary goals, course of study, and measurable annual goals
transition service
agency participation
MidSouth ARC
no updates
Boling Center for Developmental Disabilities, Dr. Fred Palmer
Excited about March 31 meeting in Nashville between the DD Council and Independent Living network. Dr. Bruce Keisling will represent the Boling Center.
Boling recently submitted a competitive grant proposal to renew their LEND program (graduate, interdisciplinary training program), which is funded by the maternal and child health bureau.
Boling is proposing to have over 30 trainees (for at least 300 hours) over multiple disciplines, including a new discipline in occupational therapy.
Boling is in discussion with the University of Memphis law school about having a LEND trainee as well (essentially developing a track over there for disability law).
Boling also hopes to have a self-advocate trainee in the LEND program within the next year or so.
LEND has been supported since 1970, and Boling should hear back about this grant application by the end of June.
In Dr. Palmer’s view, this is one of the best applications Boling has written in many years.
Thanks to all who have had major roles in this application, including Elizabeth Bishop, Toni Whitaker, Jenness Roth, and Bruce Keisling.
Vanderbilt Kennedy Center, Laurie Fleming
Teaming up with a number of organizations to celebrate Autism Awareness Month including Tennessee Brew Works, Tennessee Performing Arts Center, the Nashville Zoo at Grassmere, and the Frist Center for the Visual Arts.
Erik Carter, professor of special education, served as an expert speaker at a Congressional briefing on March 4 sponsored by the Friends of the Institutes of Educational Sciences.
The VKC is partnering with TASH for a regional conference on “Faith and Flourishing: Embracing Inclusion for People with Disabilities, Their Families, and Congregations.”
The TN Postsecondary Alliance for Opportunities for Students with IDD will have its next quarterly meeting on Thursday, May 26 from 5 – 6 PM at the Nashville Airport Marriott in conjunction with the Tennessee Disability MegaConference. This meeting is open to the public.
The TennesseeWorks Partnership will have its next quarterly meeting on Thursday, May 27 from 1 – 4 PM at the Nashville Airport Marriott in conjunction with the Tennessee Disability MegaConference. This meeting is open to the public.

DD Council (Alicia Cone)

Updating the Person Centered Initiative for Managed Care Organizations (MCOs) that Council staff mentioned at the last CAC meeting, the Council Executive Director met with TennCare Long Term Services and Support staff to discuss and develop a response to a proposal Michael Smull from Support Development Associates had submitted. The proposal was in response to a concept paper developed around person centered managed care organizations. TennCare is interested in funding introductory training for MCOs in person centered practices, and in having the consultants work with them on training related to specific requirements in the contract with MCOs. The Council will pursue the intensive 10-month training on becoming a person centered organization, with person centered practices linked to agency policy and process development. SDA was then asked to submit a formal application, and that application is currently going through the Council review and evaluation process. The projected start date is October 1.
Council staff continues to work on many priorities related to the Supporting Families Community of Practice, including producing a monthly e-newsletter. In November, we held a training for community organizations that provide supports to families of people with disabilities about the initiative and tools used for assisting families in planning for the future and for needed supports. The Council is working with Vanderbilt Kennedy Center on producing a "Kindred Stories" collection of interviews with families, conducted by Vanderbilt students, sharing stories of how families access formal services and more informal supports within their community, to be released soon. Staff presented at the "Partners in Education" conference about educators using Supporting Families tools with students and families, and will also be presenting at the MegaConference. We are partnering with the Arc TN on implementing a similar initiative, a strategic plan for aligning many different efforts across the state to provide support to families of people with disabilities and seniors.
In September, The Council organized a joint meeting between the Tennessee DD Network and the IL Network (Centers for Independent Living (CILs) and SILC). The group identified areas of, and possible projects for, future collaboration. Afterwards, we surveyed the two Networks regarding possible joint projects. The first project we are undertaking is a joint publication. To move forward with the joint special report, the Communications Director developed a survey to collect information from both Networks, so that we can share information about the two networks and this collaboration. Our second meeting of the two networks will occur Thursday, March 31st. We will delve more deeply into possible future collaborative work.
The Council's Partners in Policymaking(tm) Leadership Institute is an advocacy, self-advocacy and leadership training for adults with disabilities and family members of persons with disabilities. This core program of the Council has been training people from across the state since 1993, and boasts nearly 500 graduates. The 2015-16 Class began in late October. There are currently 25 participants in the program. The Annual Partners Reunion Conference was held March 18 & 19 at the Nashville Airport Embassy Suites Hotel. Applications are being accepted for the 2016-17 Partners Class. For more information, contact Ned Andrew or visit the Partners page on the Council website.
October 5-9, the Council hosted a second Self-Advocacy Leadership Academy. This year's focus was on the new HCBS (Home and Community-Based Services) settings rules. The Council collaborated with staff from the Commonwealth Council on Developmental Disabilities in Kentucky and ASAN (Autistic Self-Advocacy Network). Participants were from TN and KY. The 12 attendees (plus staff) heard presentations on self-advocacy, grass-roots organizing, HCBS changes to existing rules, and the history of the disability experience. While there are no future plans for a third Academy, staff is currently working on future plans for youth leadership training.
Council staff developed and presented a concept paper to the Tennessee Department of Human Resources' Strategic Learning Solutions staff regarding establishing a training program for those state employees whose work has a direct impact on individuals with disabilities and their families in TN. The proposed program would target those in state government whose work affects people with disabilities, which would include workers from at least 16 state agencies and over 55 programs. DoHR brought together other state departments in order to go through a facilitated process to select the competencies for the new leadership academy. The Orientation session and first Summit dates have been set. The application will be going out to state agencies and the curriculum is under development.
The Council was invited to partner with the TN Department of Labor and Workforce Development in the fall to sponsor their March edition of a new monthly program they produce through News Channel 5 about employment and employers called "Inside Workforce Development". The March program was focused on employment for people with disabilities, in honor of Developmental Disabilities Awareness Month. The three guests who were interviewed during the program are Council Vice-Chair Tommy Lee Kidd, Dept. of Education's Joey Hassell, and an employer at a Project SEARCH site at Vanderbilt Children's Hospital who hired people with disabilities after they completed the Project SEARCH program. The show was taped on March 1 and has aired multiple times on News Channel 5, as well as being available online. You can view our edition of the program at: (It's in 3 separate segments that should play automatically upon completion of the previous segment.)
The Council has now completed 60 days of review for its proposed new 5 year state plan. Staff wishes to thank everyone who provided either public input or review into the plan. The next step is to edit the goals and objectives section of the plan, develop work plans for FY17, and FY18, finalize all other sections of the state plan, receive final approval from the Council to submit the plan in May, and submit it to our Federal oversight agency by August 15, 2016.

Potential topics for future meetings:

If you have ideas, send them to
MCO arrangements for long-term services and supports (including housing, employment, etc.) across the state (which start in July).
Post-secondary education

Next Meeting: June 10, 2016 at MCIL (1633 Madison Ave)