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.




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.



Financial Planning



Federal ABLE Legislation and Kentucky STABLE Accounts:

The Achieving a Better Life Experience (ABLE) Act was passed in December of 2014. It is the federal legislation that allows families and individuals with disabilities the opportunity to create tax-advantaged accounts that can be used to help maintain health, independence, and quality of life. More information can be found on the Social Security Administration’s website here

STABLE Kentucky is Kentucky’s ABLE plan, thanks to a partnership between the Kentucky Treasurer’s Office and the Ohio Treasurer’s Office to offer the STABLE program to Kentuckians with disabilities. STABLE Kentucky is only available to Kentucky residents. For more information on how to open a STABLE Kentucky account, visit the Kentucky Treasurer’s website here

Estate Planning/Special Needs Trusts:
Proper estate planning becomes even more critical if you have a family member with a disability, such as Down syndrome. There are many aspects to be considered so that your loved one can experience their best life without jeopardizing their government benefits. It is critical to consult with an attorney who is knowledgeable about special needs trusts (also known as supplemental needs trusts). Following are helpful links to understand the process better. DSACK is happy to provide names of attorneys in the Central Kentucky area that specialize in this area. We also host a Saturday morning Coffee Chat at least yearly to help our families better understand this very important issue. You can check our home page calendar periodically to catch our next Saturday Coffee Chat on this subject. If you are in our database, you will receive an email with the date, and of course, we will announce future dates via our social media outlets.




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 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.  




Medical Professionals

Our Medical Outreach Coordinator welcomes the opportunity to discuss how DSACK can best serve our local medical professionals and our DSACK families whose lives uniquely intersect because of an extra 21st chromosome. Please contact Courtney or 859-494-7809.
Through DSACK’s medical outreach efforts, we strive to provide medical professionals and families with accurate, up-to-date, and balanced information that has been created through collaboration and input from both the medical and advocacy communities. We work hard to establish collaborative relationships with medical professionals who may deliver a prenatal or postnatal Down syndrome diagnosis and/or who may provide care for our families.

DSACK often connects medical professionals and new families to local and national resources and support. Our new and expectant parent packets are FREE to parents and contain gold-standard materials that have been endorsed by both national disability organizations and professional medical groups, including the National Society of Genetic Counselors, American College of Obstetricians and Gynecologists, American College of Medical Genetics and Genomics, and American Academy of Pediatrics.


Some of the presentations our Medical Outreach Coordinator has given include:
UK Center for Inter professional Health Education GRAND ROUNDS
Baptist Health Lexington’s Women’s Health Pediatric and Perinatal Care Conference
Kentucky Children’s Hospital Health Education Center
Women's Hospital at Saint Joseph East/CHI Saint Joseph Health
UK Communication Sciences and Disorders Clinical Practicum
New Vista
UK College of Social Work
Marshall Pediatric Therapy
Cardinal Hill Rehabilitation Hospital Pediatric and Adult Outpatient Therapy
Baptist Health Mother/Baby Staff
EKU Occupational Therapy Program


The National Center provides this clearinghouse of professionally recommended resources so that medical practitioners, expectant parents, and new parents have access to accurate, up-to-date, and balanced information about Down syndrome. https://www.lettercase.org/

This fact sheet summarizes recently published and updated estimates of the numbers of babies born and people living with Down syndrome in the USA
Click Here

Kentucky Department for Public Health Division of Maternal & Child Health Down Syndrome Data Brief Sept 2016 https://chfs.ky.gov/agencies/dph/dmch/ecdb/Documents/DownSyndromeDataBriefSept2016.pdf

Kentucky is 1 of 19 states that has passed a Down Syndrome Information Act into Law. DSACK is mentioned specifically in our state law as a valid local support program KRS 211.192 requires health care providers to provide the expectant or new parent with “Up-to-date, evidence-based, written information about Down syndrome”

The Kentucky Cabinet for Health and Family Services also lists DSACK as a valid resource for Parent Support Information. There are additional resources for health care providers to share:

Global Down Syndrome Foundation is a public nonprofit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education, and advocacy. Formally established in 2009, Global’s primary focus is to support the Linda Crnic Institute for Down Syndrome, the first academic home in the United States committed solely to research and medical care for people with Down syndrome. Because Down syndrome is the least-funded genetic condition in the United States, fundraising and government advocacy to correct the alarming disparity of national funding for people with Down syndrome is a major goal.

The LuMind IDSC Foundation envisions a world where every person with Down
syndrome thrives with improved health, independence, and opportunities to
reach his or her fullest potential. LuMind IDSC will accelerate research to increase availability of therapeutic, diagnostic, and medical care options and will empower families through education, connections, and support.

American College of Medical Genetics and Genomics statement on noninvasive prenatal screening for fetal aneuploidy Anthony R. Gregg, M.D., S.J. Gross, M.D., R.G. Best, Ph.D, K.G. Monaghan, Ph.D, K. Bajaj, M.D., B.G. Skotko, M.D., B.H. Thompson, M.D. and M.S. Watson, Ph.D; are The Noninvasive Prenatal Screening Work Group of the American College of Medical Genetics and Genomics https://www.acmg.net/docs/ACMG_Policy_Statememt_NIPS_May2013_GIM.pdf

University of Kentucky, Interdisciplinary Human Development Institute (Brighter Tomorrows) Resources for families and physicians. including videos and information on screening, diagnostic tests. and evidence-based practices when delivering a diagnosis of Down syndrome.

“Prenatal Diagnosis of Down Syndrome: How Best to Deliver the News,” seeks to provide evidence-based recommendations to physicians on how to best deliver a prenatal diagnosis of Down syndrome to expectant parents. Results showed that a health care professional knowledgeable about Down syndrome with specific training in the delivery of sensitive diagnoses should be part of the first conversation. A prenatal diagnosis of Down syndrome should be presented in person or at a pre-established time by phone. Physicians should provide accurate information about medical conditions associated with Down syndrome and connect parents to local Down syndrome support groups and other resources. We conclude that physicians can deliver prenatal diagnoses of Down syndrome in a sensitive manner that can be appreciated by expectant parents. http://www.brianskotko.com/documents/ajmgprenatalguidelinesfinal.pdf

“Postnatal Diagnosis of Down Syndrome: Synthesis of the Evidence on How Best to Deliver the News” Parents prefer to receive the diagnosis together in a joint meeting with their obstetrician and pediatrician. The conversation should take place in a private setting as soon as a physician suspects a diagnosis of Down syndrome. Accurate and up-to-date information should be conveyed, including information about local support groups and resources. By implementing a few cost-neutral measures, physicians can deliver a postnatal diagnosis of Down syndrome in a manner that will be deemed by new parents as sensitive and appropriate.
http://www.brianskotko.com/documents/pediatricsprenatalguidelinesfinal.pdf 



Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors

Down syndrome is one of the most common conditions a genetic counselor is likely to encounter in the genetics clinic. Given the improved outlook for individuals with Down syndrome, it is crucial that genetic counselors and other health care providers are aware of the key elements in communicating this diagnosis to ensure that families receive up-to-date and balanced information, delivered in a supportive and respectful manner. This guideline serves to 1) summarize the various etiologies of Down syndrome and the associated recurrence risks; 2) review the key components of disclosing a diagnosis of Down syndrome in both the prenatal and the postnatal settings; and 3) provide references for both professional and patient resources.

National Institutes of Health
Comprehensive resource regarding Down syndrome, screening, development and genetics and links to additional information including fact sheets in English and Spanish. https://ghr.nlm.nih.gov/condition/down-syndrome

National Council on Disability’s 2019 Report entitled: “Genetic Testing and the Rush to Perfection: Part of the Bioethics and Disability Series” https://ncd.gov/sites/default/files/NCD_Genetic_Testing_Report_508.pdf

UK Brighter Tomorrow
https://www.lettercase.org/education/medical-professionals/

Toolkit for Primary Care Providers providing healthcare for adults with intellectual and developmental disabilities, supported in part by the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities (Grant #90DD0595, Administration on Developmental Disabilities, ACF, HHS) http://iddtoolkit.vkcsites.org/

Health Watch Table for Down Syndrome https://iddtoolkit.vkcsites.org/physical-health/health-watch-tables-2/down-syndrome/



Health

DSACK is fortunate to have excellent healthcare facilities close by at UK Children’s Hospital and Cincinnati Children’s Hospital. It is also helpful to be prepared for your doctor’s visits by knowing the most recent healthcare guidelines for children, teens and adults with Down syndrome. In our experience, we find doctors are grateful to have this information and it helps establish family members as a valued member of the healthcare team. Following are valuable links to ensure your loved one with Down syndrome is receiving the best care possible.

National Down Syndrome Society’s Healthcare Guidelines: https://www.ndss.org/resources/healthcare-guidelines/

Down Syndrome Medical Care Centers: https://www.globaldownsyndrome.org/research-medical-care/medical-care-providers/

National Down Syndrome Congress Health Care and Medical Resources: https://www.ndsccenter.org/programs-resources/health-care/

Aging and Down Sydrome:
http://www.ndss.org/wp-content/uploads/2017/11/Aging-and-Down-Syndrome.pdf

https://pediatrics.aappublications.org/content/128/2/393.full

https://www.ndsccenter.org/wp-content/uploads/AAP-Guidelines.pdf

https://www.ndsccenter.org/wp-content/uploads/AAP-Health-Care-Information-for-Families-of-Children-with-Down-Syndrome.pdf

Health care Guidelines User-Friendly Chart
https://www.globaldownsyndrome.org/wp-content/uploads/2015/03/DS-Healthcare-Guidelines-English.pdf


DS Growth Chart Links

Growth charts for U.S. children with Down syndrome are available for download below. These charts can help health care providers monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.

To access the CDC Growth Charts, click here: https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/growth-charts.html

New Down syndrome growth charts released

As of Oct. 30, 2015, researchers have developed new growth charts for children with Down syndrome to replace charts dating back to 1988. Since the charts were first released, weight gain for children under 3 years has improved, and height for males ages 2-18 years has increased, according to a new report. “Clinicians will find the charts extremely useful for monitoring trends in weight and height,” said Dr. Bull, a member of the AAP Council on Children With Disabilities. “Any child found longitudinally who crosses percentiles warrants careful assessment.”

To read more about this, click here: https://www.aappublications.org/news/2015/10/30/GrowthCharts103015

Healthcare Management of Adults with Down Syndrome

The new Medical Care Guidelines for Adults with Down Syndrome will provide medical professionals, families and self-advocates with updated information about adults with Down syndrome and a checklist of recommended screenings and tests that cater to the unique medical profile of this population.

In the U.S. the life expectancy of an individual with Down syndrome has more than doubled in the last three decades, from 25 years in 1983 to 60 years today.

The last medical care guidelines for adults with Down syndrome were published in 2001 – over 17 years ago.

The new guidelines will cover medical care across multiple disciplines, including cardiology, immunology, behavioral and mental health, and obesity/metabolism.
 
To stay up to date on the publication of the New Medical Care Guidelines for Adults with Down Syndrome, click here: https://www.globaldownsyndrome.org/medical-care-guidelines/

The current Guidelines that were published in 2001 can be accessed here:
https://www.globaldownsyndrome.org/wp-content/uploads/2011/08/11-2001-American-Family-Physician-Guidelines-For-Adults-with-DS.pdf

Research

Research is vital for people with Down syndrome for numerous reasons, especially in the areas of healthcare, therapeutic care, education and inclusion. Research today can be life-changing for people with Down syndrome and their families. Following are links to important research currently being conducted. In addition to these links, DSACK is often contacted by researchers asking us to share their research and participation opportunities with our families. We share these opportunities via our social media platforms and weekly email blasts.






Waivers/Medicaid

Individuals with Down syndrome may be eligible for Medicaid benefits. These benefits can help pay for respite care, community living supports, and more. While navigating the Medicaid system can be daunting and confusing, it can be a life-changing benefit for families. There is often a long waiting list to receive services, so applying for services as early as possible is wise. The following links will help provide more information. You can also call the DSACK office at 859-494-7809, as members of our staff have knowledge and experience to help you through this process.
 
https://www.kidswaivers.org/ky/

https://chfs.ky.gov/agencies/dms/dca/Pages/default.aspx