ANNUAL REPORT - 2014

TO THE CITIZENS OF THE GREAT STATEOF NORTH DAKOTA:

The 2014 North Dakota State Council on Developmental Disabilities (NDSCDD) Annual Report highlights its 2014 projects and priorities. NDSCDD remains steadfast in its commitment to improving the lives of North Dakotans with intellectual and developmental disabilities and their families.

NDSCDD focuses on diverse projects that improve opportunities for people with intellectual and developmental disabilities, including education, employment, transportation, community living, and health care projects. Just as importantly, NDSCDD works to build the capabilities of individuals, families, and communities, enabling each to become more self-sufficient through the Developmental Disabilities Assistance and Bill of Rights Act (the DD Act).

NDSCDD projects are developed in direct response to the concerns and ideas voiced by consumers, families, service providers, policymakers, and other professionals. By listening to these collective voices, NDSCDD advances the dialogue for change.

Members of NDSCDD work together in a dedicated spirit of progressiveness, always mindful of North Dakota’s plan, mission, and goals. NDSCDD members continue to embrace the challenge of shaping a brighter future for North Dakotans with intellectual and developmental disabilities and their families.

Best regards,

Cheryl HessExecutive DirectorNorth Dakota State Council on Developmental Disabilities

NaTasha SawickiNaTasha Sawicki started with the Council in May 2014. She was hired as Program Coordinator for the North Dakota State Council on Developmental Disabilities. NaTasha has a background in Social Work which she received from the University of Mary in Bismarck, N.D. In the past NaTasha as worked at Sanford Medical Center as a Social Worker, as well as with Easter Seals and Community Options as support staff for parents with children who have disabilities.

THE NORTH DAKOTA STATE COUNCIL ON DEVELOPMENTAL DISABILITIES

State-Level Planning and Goal Implementation

• The Council advocates for policy changes that promote choice, independence, productivity, and inclusion for all North Dakotans with intellectual and developmental disabilities.

• The Council supports and provides funding for projects and activities that maximize opportunities for consumers and family members.

• The Council serves in a planning and advisory capacity for state policymakers and agencies relative to services for persons with intellectual and developmental disabilities.

The North Dakota State Council on Developmental Disabilities (NDSCDD) is a federally funded, self-governing organization charged with identifying the most pressing needs of people with intellectual and developmental disabilities in North Dakota. The Council was established in 1979 under Chapter 25-01-01.1 of the North Dakota Century Code in accordance with the federal Developmental Disabilities Assistance and Bill of Rights Act.

The Council engages in advocacy, capacity-building, and system change activities. Comprised of 20 governor-appointed members, the NDSCDD is dedicated to ensuring that the estimated 13,000 North Dakotans with intellectual and developmental disabilities have the opportunity to be independent, productive, and valued members of their communities. At least 60 percent of the members must be persons with developmental disabilities, or parents, guardians, or other immediate relatives of persons with developmental disabilities.

NDSCDD receives approximately $451,000 a year to carry out activities in its federally approved Five-Year State Plan.

The NDSCDD submits a Five-Year State Plan to the U.S. Administration on Intellectual and Developmental Disabilities. The 2012–2016 State Plan includes targeted goals and objectives related to all or some of these priority areas:

• Community living• Employment• Transition• Health care• Self-advocacy• Leadership

Activities in the plan include: • Outreach • Training • Technical assistance • Community education and support • Interagency collaboration and coordination • Barrier elimination • Systems design and re-design • Coalition development and citizen participation • Policy-making • Grant funding that focuses on demonstration of new and innovative approaches to services and supports.

MISSION STATEMENT

Transportation

Recreation

Employment

Quality Assurance

Education& Early Intervention

Child Care

Health Care

Housing

GOALS AND OBJECTIVES

FEDERAL AREAS OF EMPHASIS

Individuals with developmental disabilities, their families, and stakeholders will benefit from advocacy and capacity-building activities ensuring that individuals with developmental disabilities will have the services and supports they need in order to live in the communities of their choice.COMMUNITY LIVING

Individuals with developmental disabilities, their families, and stakeholders will benefit from advocacy and capacity-building activities that will result in desirable employment options for people with developmental disabilities.EMPLOYMENT

Youth and young adults with developmental disabilities are involved in transitional activities to support their independence so they are prepared for life outside of their educational settings.TRANSITION

People with developmental disabilities, their families, and stakeholders will be provided necessary knowledge and skills in order to access comprehensive health care.HEALTH CARE

Individuals with developmental disabilities will be provided leadership skills development and opportunities to exercise self-advocacy skills in their communities.SELF-ADVOCACY

Families and stakeholders of individuals with developmental disabilities will be provided leadership skills development and opportunities to exercise advocacy skills in their communities.LEADERSHIP

GO

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2014 Funded Organizations:• North Dakota Center for Persons with Disabilities• Family Voices of North Dakota• Arc of Bismarck• KAT Communications

Council Projects and ActivitiesThe NDSCDD uses its information about the service system, disability issues, and people’s needs to:

• Develop projects and activities that are focused on the gaps and barriers in the current array of services and supports

• Help North Dakotans with disabilities and their families live in, work in, and contribute to their communities

These activities are designed to impact the entire state and are developed in close collaboration with consumers, parents, advocate groups, state agencies, service providers, and state and local policymakers.

The NDSCDD: • Analyzes state and federal

policies, including agency state plans

• Informs policymakers about disability issues and their impact on people with disabilities and their families

• Makes recommendations regarding policy

Historically, nearly 70 percent of NDSCDD funds, $300,000 - $350,000, is awarded annually to 9-15 grants. These include direct service demonstration projects that:

• Invest funds in local communities • Test new ideas • Help state agencies develop

more effective ways to provide services

Grants also provide technical assistance and training to individuals, service providers and agencies, as well as other activities.

Fiscal Year 2014 Grant Award by Goal Area

Leadership$70,000(23%)

Community Living$47,596(16%)

Transition$41,298(14%)

Health$108,099

(36%)

Advocacy$32,000(11%)

Housing Project Maximizes Independent Living OptionsThe Inclusive, Affordable, and Accessible Housing Project, a grant NDSCDD awarded to Minot State University, developed statewide materials that help ensure individuals are able to live more inde-pendently within a community of their choice. The project partnered with individuals with disabilities, Money Follows the Person Housing Team, other housing stakeholders, and human service providers to accomplish the project’s goals.

Arc of Bismarck Continues Programs and ProjectsThe NDSCDD awarded a grant to the Arc of Bismarck to continue the Partners in Policymaking Program. The program, designed for adults with disabilities and for parents of children with disabilities, teaches leadership skills and how to develop positive partnerships with elected officials and other policymakers.

The Arc of Bismarck also continued to build episodes for Capability Chronicle. This community -based documentary aims to shatter the myths and stereotypes surrounding people with disabilities.

PAVE Project Makes Significant ImpactsMinot State University’s PAVE Project is a program that addresses the bullying of students with developmental disabilities. The project, which was carried out in three middle schools around the state, equips middle schoolers with advocacy skills. Survey comments showed that the PAVE project had a significant impact on participants’ lives.

“Because of the PAVE Project, students with disabilities are more accepted in the hallways, lunchroom, assemblies, and extracurricular activities.”

“Since my daughter has participated as a self-advocate in the PAVE Project, her level of inclusion at school has increased dramatically.”

Our son Cash is 3 years old. In June 2012, he was without oxygen for a period of time and not breathing. It was touch and go for 19 days, and the doctors in Fargo decided there was nothing they could do, so they flew him to Minneapolis.

When the neurologist came in, Cash was in a vegetative state, his EEG was scrambled and his brain was completely fried. They said he would never be normal, he would never wake up, he would never know purposeful movement, recognize a voice, or anything at all. They told us we should end his life.

At the time, I didn’t understand what Family Voices was. Family Voices is exactly what they say they are. They will speak for your family when you are down, when you are at the bottom, when you don’t know what to do anymore. Family Voices literally speaks for you, speaks up for you and what’s right for you. They were our emotional support, like family.

Shortly after Cash’s 1st birthday, we were served with a letter that stated our insurance was going to drop us. We were told we had no options, that we could not fight it, if we didn’t take him out of the hospital we would be responsible for around $250,000 a month. They told me “Kelly, you’re going to lose your house, you’re going to lose everything.” I kept being told I had to put my son in an institution, and I refused.

Finally, after many months, we were told we could transition home, and we had no idea what that entailed. That is when Family Voices really stepped in, they coordinated, they did phone conferences, they pulled in all the right people, assisted with appeals and they know the right questions to ask. This is our new normal, and Family Voices understands that for us and for many other families. I consider them angels that came out of nowhere and have your back, and look out for you.

- Kelly Hatlen

Note: The NDSCDD awarded Family Voices of North Dakota a grant to support their Parent-to-Parent program.

The North Dakota American Indian and Developmental Disabilities (ND AIDD) initiative succeeded this year by providing a wealth of culturally reflective disability education and awareness information and activities to American Indians with developmental disabilities. The project also reached out to immediate/extended family members and the tribal community as a whole. Resources included three videos, two resource documents, various other print materials, and a one-day summit.

Family Voices Parent to Parent Success Story: Cash’s Story

Initiative Supports American Indians with Developmental Disabilities

COUNCIL MEMBERSDarcy AndahlConsumer

Maggie AndersonDepartment of Human Services

Dr. Brent AskvigUniversity Center of Excellence

Missi BarankoParent

Perry BoudlinConsumer

Wendy ConicaConsumer

Tammy DeSautelJob Service North Dakota

Tim HusethService Provider

Jennifer JacobsonParent

Pam KollingParent

Tamara LelmDepartment of Health

Holly MajorParent

Mitchell NeumillerConsumer

Brenda SchmidtParent

Alex SchweitzerState Developmental Center

Sheryl StradingerParent

Gerry TeevensDepartment of Public Instruction

Trevor VannettConsumer

Cindy VollmerProtection and Advocacy

Heather WittliffParent

WE HAVE MOVED!

For More Information:North Dakota State Council on Developmental Disabilities919 S 7th St, Suite 503 Bismarck, ND 58504701.328.4847 | www.ndscdd.orgThis document is available in alternative formats.

The NDSCDD is represented on:• The North Dakota State Community of Practice on

Transition• The North Dakota Employment Learning Community• The Seclusion and Restraint Task Force• The North Dakota Olmstead Commission• The North Dakota Money Follows the Person

Stakeholders Committee• The A-STEP Committee• The North Dakota Transition Task Force• The North Dakota Legislative Partnership Committee• North Dakota Disabilities Advocacy Consortium• North Dakota APSE

Visit North Dakota’s top transition website:www.LaunchMyLifeND.com