Advocacy

Advocacy in all its forms seeks to ensure that people, particularly those who are most vulnerable in society, are able to: have their voices heard on issues that are important to them; defend and safeguard their rights; and have their views and wishes genuinely considered when decisions are being made about their lives. (Wikipedia)

We believe strongly in advocacy for people with Down syndrome. We provide information about national and local issues related to Down syndrome via our email Blitz, social media posts, and quarterly magazine articles. Often times, these notifications will contain a link to contact your legislator, and in most cases, this takes just a few more short minutes. To find out more about local and national issues, please visit the following links:


This guide is intended to provide tools and advice to self-advocates who are interested in becoming more involved in legislative advocacy to work on policies and laws.


Behavioral Concerns


In our lifetime, the single most dramatic change effected by our community has been the astounding improvement of the health of people with Down syndrome. Through the caring innovation of medical professionals, the typical lifespan of an individual with Down syndrome now approaches 60 years of age, the average for all people. Equally important, advancements in cardiology, nutrition, the behavioral sciences, and more have opened a high quality of life for people with Down syndrome.


Down Syndrome & Alzheimer’s

People with Down syndrome are living longer and more productive lives than ever! As recently as the 1980s, the average life expectancy for an adult with Down syndrome was only 25; today the average life span is 60-65. However, adults with Down syndrome are at a higher risk of developing Alzheimer’s disease due to the fact that the 21st chromosome is a gene that is strongly linked to this disease. That does NOT mean everyone with Down syndrome will experience Alzheimer’s disease.  

There are numerous global studies researching the link between Down syndrome and Alzheimer’s disease. Many have opportunities for families to participate, including one such study right here in Lexington at the UK Sanders Brown Center on Aging. The following links are provided to give further information and opportunities to help with research efforts.


Down Syndrome & Autism



Autism is a disorder that affects the brain’s normal development of social and communication skills. The CDC states that one in every 68 children in the general population is on the autism spectrum. It is believed that up to 18 percent (some research suggests up to 39 percent) of individuals with Down syndrome also have autism spectrum disorder.

https://www.globaldownsyndrome.org/navigating-dual-diagnosis-syndrome-autism/



Individualized Education Plan (IEP)


The Individualized Education Program, often called the IEP, is a legal document under U.S. law that is developed for each public-school child in the U.S. who needs special education. The IEP is created through a specific team of the child’s parent and district personnel who are knowledgeable about the child. (Wikipedia)

Developing an IEP with your student’s team from school can be daunting at times. As with most things in life, the bad experiences are often talked about much more than the good ones. That being said, the more you know the better you can advocate for your student’s educational needs. We encourage you to reach out to us as you navigate this process. Our staff has a wide variety of experience and expertise. You may also want to get involved with our Learning Program as we discuss the IEP law and process in depth during the parent classes. Here are some links to help as well:



As a parent or caregiver it is important to be fully informed about all of the education options for your child with Down syndrome. Research has shown that including children with Down syndrome in the regular classroom not only benefits your child but the school as a whole.




Educators



Children with Down syndrome are more likely to experience success in a school where inclusion is embraced. Research shows that the whole school benefits from including all students with disabilities. Below we have information regarding the learning style of individuals with Down syndrome along with some of our favorite resources and books. Please feel free to reach out to DSACK at any time with questions. Email dsack.org@gmail.com or call 859-494-7809.



Employment


Employment is about so much more than a paycheck. While earning money may be the motivating factor, employment fosters independence, healthy self-esteem, relationships, and access to our community. Sadly, unemployment and underemployment for students with intellectual disabilities are still the status quo in Kentucky. Too often, families are not sure of the process to gain supports and resources available to help their students achieve meaningful employment. Students are often steered toward meaningless jobs or jobs that pay subminimum wage.

So, what are the keys to finding meaningful employment for people with Down syndrome? The first step is to raise expectations of what life will look like after high school. Planning for the transition after high school for a student with an IEP should happen as early as age 14. At that time, schools should be inviting the Office of Vocational Rehabilitation to the IEP (link to IEP link under education) meeting. If schools do not have them on the invitation list, parents/caregivers can request they be added. Parents/caregivers and students should share their expectations at all IEP meetings and ensure that the IEP plan and team are working towards those high expectations. Here https://www.pacer.org/transition/resource-library/publications/NPC-20.pdf) is an article from Pacer.org regarding the importance of high expectations along with helpful tips to help parents/caregivers work with schools.  

Many times, parents/caregivers are given bad advice that wages earned from employment will automatically stop any and all government benefits. In reality, the first $85 earned monthly does not change your student’s monthly SSI benefit; after the first $85, your student will keep $.50 of their SSI benefit for every dollar they earn working. Here (https://www.kentuckyworks.org/wp-content/uploads/2019/12/The-Truth-About-Working-While-Receiving-SSI-in-2020.pdf) is an infographic with more information. For students under age 22 and regularly attending school, there is a student-earned-income exemption allowing students to earn up to $1,900 per month up to an annual exclusion of $7,670. Here is an infographic with more information about the student-earned-income exclusion. 

Kentucky is an Employment First state, which means employment in the community will be considered the first and primary option for persons with disabilities who want to become employed. This focus is intended to increase the employment of workers with a disability in the general workforce, resulting in a workforce that will continue to grow the economy of the state. 

Another key factor to consider is competitive integrated employment vs. segregated employment at subminimum wage. Here is an excellent and thorough resource explaining the two. We encourage you to read it in its entirety.
https://idaction.org/documents/resource/56.pdf

Following are helpful links as you explore the topic of employment. Be sure to check our DSACK’s We Work! program, which offers classes on pre-employment skills to students and how to navigate the transition from high school to adulthood for parents/caregivers.