World Down Syndrome Day 2018

World Down Syndrome Day 2018 was a huge success as we traveled to Frankfort to raise awareness and advocate for the rights, inclusion and well-being of those with Down syndrome. We had a record crowd for our rally in the Rotunda and had sit-down meetings with 14 legislators. It was a good day all the way around!

WDSD 2018 Talking Points


Importance of Medicaid Waivers

1. Medicaid waiver programs such as the Home Community Based Waiver, the Michelle P. Waiver and the Supports for community Living Waiver have been life-changing for individuals with Down syndrome and their caretakers. Home and Community-Based Services (HCBS) Waiver program, often referred to as the Medicaid waiver, was created by the federal government to allow the government to ignore, or waive, some of its own rules so it can pay for certain services that enable individuals with a disability to live at home or in the community rather than in an institution.


Today many families rely on waiver programs to allow their loved one to live at home or in community-style living arrangements. Without these waivers, many families would be forced to live on one income rather than institutionalize their loved one, which may put them at or below poverty level having detrimental effects on the entire family, placing extra burden on the state for support to families such as food stamps and children’s health care benefits, and decreasing tax revenues due to unemployment.


2. The 2017 debate over the structure and funding of Medicaid revealed that Medicaid has broad general support and intense support from special populations served by the program. In addition, the proposed changes would have different implications for states given the program variation across states. There is still concern that Congress may consider legislation to cut and cap Medicaid in 2018. (Source: Kaiser Family Foundation) If federal legislation moves to block grant funding, it is imperative to the welfare of the thousands of individuals with disabilities and their care providers that Kentucky Medicaid Waiver programs remain fully funded.


3. Share examples of how waivers have positively impacted your life, such as child care during working hours, improved health care, better access to community involvement, diversity in communities, which studies have found to improve education, economy and the overall community life.


4. House Bill 200: (This may go to Senate before 3/21.  We will keep you updated.)


The House passed House Bill (HB) 200, its version of the 2018-2020 Biennial Budget.  It differs from the Governor’s budget in numerous ways, some of which are positive for persons with ID/DD who chose to live and/or receive services in the community.  Of particular note is increased funding for SCL providers and re-balancing of money spent on institutions versus the community.  More specifically:


$10.5 million and $24.6 million in federal funds have been added to HB 200 to increase Supports for Community Living Waiver Program services by 10%


HB 200 directs the Cabinet for Health and Family Services (CHFS) to transition all qualified individuals from ICF/IDs to community living with additional services, if needed, and with the cost savings used to further increase the reimbursement rates for SCL


The bill goes next to the Senate and will assigned to the Senate Appropriations and Revenue (A&R) Committee which will hear it in the coming weeks.  Changes can be made by that committee.  Senators need to hear from anyone interested in these issues.


High Expectations for Education & Employment


1. The Kentucky Department of Education’s Comprehensive Strategic Research Plan states: “Vision with action is merely a dream. Action without vision jus tpasses the time. Vision with action can change the world” – Joel Barker, Corporate Consultant. It is the vision of Kentucky Department of Education and the Kentucky Board of Education to ensure that all students across the commonwealth are provided the opportunities and resources to become proficient and prepared for success. Additionally, this means that students have the opportunitiy to graduate college and/or are career-ready. This comprehensive strategic research plan communicates the intentional and aligned acts of improvement based on the practices of research to be implemented by the strategy teams and goals leads of the Kentucky Department of Education.


The Vision and Mission for Education in Kentucky: Every child proficient and prepared for success. (Source: Kentucky Department of Education)


2. Inclusion is a philosophy of education based on the belief in every person’s inherent right to fully participate in society. It implies acceptance of differences, and access to the educational experiences that are fundamental to every student’s development. (Source: Down Syndrome Association of Central Texas’ Educator Packet)


When children attend classes that reflect the similarities and differences of people in the real world, they learn to appreciate diversity. Respect and understanding grow when children of differing abilities and cultures play and learn together. (Source:


3. People with Down syndrome want to work. Too often, they are leaving high school unprepared to obtain meaningful employment. Kentucky Post-Secondary Outcome Center’s data suggest that among former Kentucky students with significant intellectual (moderate and severe intellectual) disabilities who left school after the 2013-2014 school year, only 11.1% engaged in competitive employment, just 2.6% enrolled in higher education and 58.6% reported being not engaged in any post-school activities. Among former students with multiple disabilities, only 16.8% engaged in competitive employment, 6.3% in higher education, and 47.4% were no engaged in any activity. (Source found here)


Educators must set high expectations throughout our students’ educational career for the outcomes listed above to improve. The reality is that even today, our schools don’t prepare our students with Down syndrome to further their education or obtain employment in integrated environments with a fair living wage. Our state spends millions of dollars providing education for students with disabilities with very poor outcomes. This needs to change!




(Note: This is not an ask, rather an opportunity to express thanks.)


This is a tremendous tool to allow people with disabilities to save money, which leads to increased independence and a better quality of life. Kentucky’s website is very informative and easy to navigate.