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March 2018: Highlights and Hot Topics

highlights

A Message from NCCDD Chair Alex McArthur and Executive Director Chris Egan:

Alex and ChrisIt has been an exciting March, celebrating another National Developmental Disabilities Awareness month with the theme “See Me for Me!” What better way to celebrate the theme of See Me for Me than to join everyone around the world as we watched the Paralympic Winter Games in PyeongChang earlier in March. Team USA brought home eight gold, seven silver and six bronze medals!

Also this month and throughout our state of North Carolina, there was a plethora of events, many webinars, conferences, summits and meetings, all bringing awareness to intellectual and developmental disabilities with a focus on the importance of integration and inclusion. Two of our NCCDD members participated in and led breakout sessions at the “Power of Play” conference hosted by the National Inclusion Project. Council member, Dr. Amanda Bergen, spoke about being a natural community support from a variety of perspectives, and NCCDD staff member, Philip Woodward, discussed accessible tourism throughout North Carolina. Read on for more details about all that this conference offered.

Speaking of the importance of choice and involvement in community, we’re also excited about the creation of our interactive digital Lookbook and would love to feature you. This visual representation of North Carolinians with intellectual and developmental disabilities will be viewed widely and you can be an integral part of it by sharing your story with photos we take of you at work, at play, volunteering, raising family or just out and about in your community. We’ve posted the link in this newsletter for you to sign up to participate. We need your help with this, so please pass this along to anyone that you think would be interested to be part of the digital Lookbook!

In this edition of HHT, we are including information about respite vouchers through NC’s Lifespan Respite Care efforts. Respite is a break for unpaid caregivers who provide ongoing care for an individual with a disability. Vouchers are available! We encourage you to apply today as the deadline of June 7 is fast approaching. You’ll find the application links below in our newsletter.

The snows of winter are now (we hope!) past us and we’re looking forward to a vibrant and healthy spring for all. As always, we sincerely appreciate all you do to support the priorities of individuals with I/DD and families.

With best wishes,

Alex McArthur        Chris Egan
Chair                      Executive Director

Public Policy Update

FEDERAL POLICY

Government Funded through September 20, 2018

On March 23, President Trump signed a spending bill passed by both houses of Congress before lawmakers left for an in-district work period through early April. This $1.3 trillion spending package covers the remainder of Fiscal Year 2018 (which ends on September 30) and includes a number of increases for disability programs. Some highlights include:

  • DD Act Programs: DD Councils, Projects of National Significance,
  • University Centers for Excellence, and state Protection and Advocacy Systems
  • IDEA Funding
  • Lifespan Respite Care Act program
  • National Family Caregiver Support Program
  • State Grants to Remove Barriers to Voting
  • 811 Housing Vouchers among others.

A funding decrease of note includes Supported Employment State Grants. Two additional provisions passed as part of the spending bill. Kevin and Avonte’s Law (S.2070) aims to help prevent and reduce harm associated with wandering children with Autism and other developmental disabilities through grants to law enforcement and other agencies. These grants will pay for education, training and technology. The other passed provision includes a required study by the Government Accountability Office on the use of restraint and seclusion in schools, reporting on those practices and alternatives to use.

Money Follows the Person (MFP) was not reauthorized in the spending bill. MFP is a federally-funded grant program to states which supports individuals who wish to transition from institutional settings to the community. States can spend any remaining funds. However, without reauthorization, these state programs will run out of money – seven states already have. Find out more about North Carolina’s MFP program here. We will continue to educate and inform on the importance of this successful program.

State

The Legislative Research Committee on Intellectual and Developmental Disabilities met this week for their third meeting. During the meeting, the committee heard from several organizations about different models of vocational supports and supported employment. Previously, the committee received information on the different state agencies involved in employment for people with I/DD, as well as state wide advocacy organizations that promote employment opportunities. No specific recommendations have come out of the committee yet. We will continue to monitor the work of this committee.

The Department of Health and Human Services continues to work toward medicaid managed care for North Carolina. Several concept papers have been posted and the Department is receiving feedback. One of particular interest is the Beneficiaries in Medicaid Managed Care. This paper describes the Enrollment Broker who will be integral to assisting individuals with enrollment. While the plan is still for most people with I/DD to phase in up to four years after the initial implementation, the Enrollment Broker will continue to be a part of the system and will need to have knowledge about I/DD and the types of supports that are needed in order to effectively assist people. We will continue to monitor the release of concept papers and provide feedback as appropriate.

Several of the potential managed care organizations have reached out to the I/DD community to gain more information as they consider bidding to operate one of the Prepaid Health Plans which will manage care for medicaid recipients. As stated earlier, people with I/DD will not initially be included but are expected to transition into the plans later. The Arc of NC hosted a panel of insurance companies who are interested in bidding which provided a forum for sharing of information about the unique considerations of managing care for the I/DD population.

Developmental Disabilities Awareness Month and the Power of Play Conference

Philip Kathie Snow Alex And ChrisMarch is Developmental Disabilities Awareness Month, and NCCDD had the opportunity to support and participate in the Power of Play Conference hosted by the National Inclusion Project at Marbles Kids Museum in Raleigh on March 20-22.

NCCDD helped to bring Kathie Snow of Disability Is Natural from San Antonio, Texas to Raleigh for the opening keynote, where Kathie discussed how disability is natural and how inclusion is natural. Describing how conventional wisdom sees a disability as a problem, she said a disability is only a medical diagnosis and should not define an individual.

Also, NCCDD member Dr. Amanda Bergen led the breakout session Being a Natural Community Support: A Sibling, Parent, Educator, and Volunteer’s Perspective, and Systems Change Manager Philip Woodward led the breakout session ACCESS North Carolina: The Americans with Disabilities Act (ADA) and Accessible Tourism in Our State.

Closing keynote speaker Kat Holmes, an inclusive designer from Seattle, Washington who used to work for Microsoft before founding her own company, discussed how inclusive design innovations can benefit each of the world’s 7.4 billion unique individuals.

Other highlights included Dr. Laura Klinger of the UNC TEACCH Autism Program educating the audience about successful outcomes for individuals with autism and various breakout sessions focusing on topics ranging from college readiness to how attitudes and beliefs affect inclusion to the science of developing friendships. More than 100 people attended from across the country representing educators, early interventionists, parks and recreation staff, YMCA staff, tourist attraction staff and more.

Respite Vouchers Available for Caregivers

holding handsIf you know of a caregiver who is in need of respite, Lifespan Respite Vouchers are still available for the 2017/2018 funding cycle. The Vouchers are available for eligible family caregivers taking care of a person of any age with special needs. The vouchers are made possible through federal funding awarded to the North Carolina Division of Aging & Adult Services, the state’s federal Lifespan Respite Grantee.

The voucher process is managed by the High Country Area Agency on Aging, and the vouchers carry a one-time maximum value of $500. These reimbursement-based respite vouchers are intended to serve those families who are "falling through the cracks" because they are unable to access other sources of publicly-funded respite and cannot pay privately. There are about 65 vouchers still available statewide during this round of grant funding so referring agencies are encouraged to consider clients who are most in need of respite and help them by completing an application on their behalf.

As in years past, the $500 caregiver-directed vouchers are accessed via an online application you, as a referring agency or professional, help the caregiver complete. Applications are not accepted directly from caregivers. They must be completed by a referring agency professional. A county DSS case manager, school or agency social worker, hospital or health care discharge planner, and many others working directly with families in need can be a referring agency professional.

It is important that individuals familiarize themselves with the respite voucher application. The application is designed to be filled out by a referring agency/professional with the caregiver on the phone or in person with you as you complete the application.

Caregivers can receive up to $500. Vouchers expire after 90 days and, in order to be eligible for the 2017/2018 funding cycle, all reimbursement materials must be submitted by June 7, 2018, which means that applications must be approved in advance of that date in order to use the funds.

Find the application at: https://www.highcountryaging.org/ under the Respite tab at the top of the home page.

NCCDD Lookbook Project - Call for Stories!

lookbookNCCDD is creating an interactive digital Lookbook that will be a visual representation of North Carolinians with intellectual and developmental disabilities (I/DD) at work and at play. The Lookbook aims to get an intimate look at and visually share the stories of people with disabilities in North Carolina that are employed, looking for work, utilizing many of North Carolina's Vocational Rehabilitation services or in Inclusive Post-Secondary Education (IPSE) programs learning the skills that will help them in the workforce.

NCCDD’s photographers are looking for subjects from across the State to photograph and interview for the Lookbook! Whether you are in the mountain, Piedmont or coastal region, we want to hear and share your story!

If you are interested in being featured in the lookbook, visit https://nccdd.org/news-media/blog/54-initiatives/647-nccdd-is-looking-for-individuals-to-be-featured-in-disability-lookbook.html

 

NCCDD Council Member Spotlight - Kelly Woodall

kellybrianKelly Woodall began her second term with the North Carolina Council on Developmental Disabilities (NCCDD) June, 30, 2016, and describes the Council’s work as very important, which is why she is happy to serve. She believes this is what she was meant to do in life. Her focus on the Council and in life is summed up when she says, “I wish I could have the same rights as everyone else.” Born with cerebral palsy, Woodall learned early that many rights were not and would not be extended to her.

“When I was a kid,” she says, “I was not eligible for services. My dad made too much money.” Yet, the money was not enough to stretch to cover many of her needed services. Her father was told the solution was to divorce Woodall's mother, putting them at such a low income level that she would now be eligible for what she needed. She saw this as one of many examples for needed systems change.

“It’s important for me to use my experiences to speak for those who cannot speak for themselves,” explains Woodall, about her work on the Council as well as in the community. Armed with a bachelor’s degree in Psychology and Social Work from Saint Andrews Presbyterian College, Woodall is setting up a micro-enterprise offering her services as a public speaker and mentor to individuals with disabilities who are seeking employment.

She applauds the work being done by the joint efforts of the NCCDD in partnership with Money Follows the Person for the Supported Living initiative that assists individuals with disabilities to move into their own homes and communities with supports. “It is fantastic work, it needs to be done,” Woodall says.

Woodall would like to see the Council and other organizations continue to take the lead to modernize systems and improve opportunities for individuals with disabilities and their families. So many of the laws that create critical scaffolding for the community don’t reflect current realities, skills, and goals individuals with disabilities have for the future.

How can we modernize programs, funding structures, and regulations to ensure individuals with disabilities can continue to enjoy life-- including gainful employment, marriage and parenthood-- alongside people without disabilities without losing the supports they need? How do we address attitudinal barriers? Help individuals with disabilities see and achieve futures beyond what’s been done in the past?

For Woodall, these questions are not rhetorical. As as an advocate and entrepreneur who has dated her partner, Brian, for many years, she wrestles with these realities daily.

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