Health Care Resources
Questions about what health care is needed (and how to pay for it) are overwhelming at first. When you get a diagnosis, you may find your healthcare professional does not have prior experience with Down syndrome.
DSACT has provided information and resources to hundreds of healthcare professionals in Central Texas, and many of these resources are on this page. We strive to help families and doctors get the most up-to-date medical information available.
Children with Down syndrome need the same medical care as any other child. Because children with Down syndrome may be at risk for certain conditions, however, parents and medical professionals should read the American Academy of Pediatrics "Health Supervision for Children with Down Syndrome" checklist even if the child is not showing symptoms of a specific condition. This promotes prevention and early treatment of medical conditions, rather than waiting for problems and then playing catch-up. If your doctor is not familiar with them, take a copy to every well-check appointment and ask him or her to review and follow the Guidelines in ordering diagnostic and screening tests.
We also invite parents to download and take to your OBGYN and/or pediatrician, at the next well-check, our "DSACT Letter to Clinicians." The letter outlines recent developments related to Down syndrome cognition research, pediatric healthcare guidelines, and prenatal screening. It also lets doctors know that DSACT will provide materials for them to give new parents at the time of diagnosis. Thanks for getting the word out to the medical community!
Common medical considerations for individuals with Down syndrome occur at the following frequency (many of which are correctible through surgery and/or medical treatment):
- 60 to 80% have hearing deficits
- 40 to 45% have congenital heart disease
- 8 to 12% have intestinal abnormalities
- 3% have cataracts, and children with DS often have other eye problems such as strabismus
- 15 to 20% have hypothyroidism
- 15% have atlantoaxial instability
- 45% have sleep apnea
People with Down syndrome may also have immunologic concerns, leukemia, Alzheimer's disease (including early-onset), seizure disorders, celiac disease, skin disorders, nutritional concerns, and other skeletal problems.
Parents need to know it is very unlikely their child will develop all or even most of these medical conditions, and need to understand many are highly treatable. Parents also need to know that life expectancy is now 55-60 years with some people living into their 70's. Individuals with DS have lower than average risk of developing solid tumors.
Depending on whether your child has any one or more of the medical conditions, he or she may benefit from seeing (in addition to the regular pediatrician) an ENT (ear, nose and throat doctor) for hearing and tonsil/adenoid issues, a pediatric ophthalmologist (not an optometrist) for eye issues, a pediatric endocrinologist for hypothyroidism, pediatric dermatologist, and/or a pediatric cardiologist. The DSACT yahoo and Facebook groups are a great place to ask for recommendations for pediatricians and specialists who welcome children with Down syndrome into their practice and provide attentive care. Many families use the specialists and sub-specialists at "Specially for Children," a large group of pediatric specialists who practice at Dell Children's Medical Center.
The Children's Comprehensive Care Clinic in Austin is a medical home serving children with multi-system medical needs, in addition to a Down syndrome diagnosis. Psychiatric care is available for clients with Down syndrome; however, the Clinic does not offer psychiatric services to children whose medical home is another provider. Clients must be under 18 years of age at the time of referral and must live within 25 miles of the Clinic. Referrals are accepted from anyone in the community (including parents/guardians). The referral process begins with a phone call to the Clinic at (512) 628-1898 during which you will discuss your child's medical needs, insurance, and where you live. The Clinic accepts a wide range of insurances, including Medicaid. The Clinic is located at 5339 N. IH-35 Frontage Road, Suite 100; Austin, TX 78723.
At this time, there is no Down syndrome specialist or Down syndrome clinic in the Central Texas area.
Texas Medicaid programs
The Texas Health and Human Service (HHS) administers Medicaid waiver programs throughout Texas. Texas Medicaid waiver programs have very long interest lists. Although eligibility for some waivers begins at age 18 years, it is important to add your child's name to these lists as early as possible (preferably at birth) and to update your information and confirm your continuing interest annually. (Your child's birthday each year is a good reminder to do this!) Local authorities are charged with providing services for two Medicaid waiver programs: Texas Home Living (TxHmL) and Home and Community Based Services (HCS). Use this handout to find more information about Texas Medicaid waiver programs. Use this handout to find your local authority's contact information. Texas HHS maintains a great deal of information about IDD supports on its website.
Consumer Directed Services (CDS) are gaining in popularity in recent years. This arrangement allows people with disabilities to choose their own care providers at home and in the community. Many parents, guardians, and siblings wonder if they can be compensated for serving this role. The answer to this question is: sometimes. The decision depends on the waiver program, and sometimes, the managed care organization administering the program. Find more information about CDS here.
Another resource is the STAR+PLUS Medicaid program, a managed care program for people with disabilities and/or over 65 years old. This program may allow a family member who does not reside with the person with a disability, to be paid as a As with Texas Medicaid waiver programs, STAR+PLUS Medicaid has a long waiting list, so it is important to add your child's name to the list early, well before age 21 (eligibility age).
Down syndrome cognition research is making great strides to:
- identify the genes on chromosome 21 that cause characteristics of Down syndrome
- develop treatments for the cognitive effects of Down syndrome
- transfer therapies developed for Alzheimer's disease to Down syndrome
Recent advances include:
- 2018: Launch of LuMind Research Down Syndrome Community
- 2017: LuMind Research Down Syndrome funds planning efforts to establish a Down Syndrome Clinical Trials Consortium, focused initially on advancing Alzheimer's therapies for individuals with Down syndrome
- 2014: Three different clinical trials (Phase II Roche study and two others) ongoing.
- 2014: Kennedy Krieger Institute at Johns Hopkins has launched 2 studies of the use of Alzheimers treatments for individuals with Down syndrome.
- 2013: Successful completion by Roche Pharmaceutical of a Phase I clinical trial to investigate safety of molecule to address cognitive and behavioral deficits associated with Down syndrome.
- 2013: Launch of national Down Syndrome Patient Registry.
- 2011: Formation of NIH Down Syndrome Consortium.
- 2008: Establishment of Linda Crnic Institute for Down Syndrome at the University of Colorado at Denver with $34 million grant to address basic research, clinical research and clinical care.
- 2007: Stanford study of Down syndrome mouse models noted 17 days of low-dose therapy with pentylenetetrazole (PTZ) produced normal learning behavior.
- 2005: Establishment of the Center for Research and Treatment of Down Syndrome at Stanford University. The Center seeks to apply research discoveries to useful treatments and focuses on the cognitive effects of Down syndrome.
- 2003: Establishment of the Down Syndrome Research and Treatment Foundation. DSRTF's mission is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.
DSACT does not endorse (or discourage the use of) nutritional supplements developed specifically for Down syndrome (such as Nutrivene), or medications such as Piracetam, Aricept, or Exelon for use with individuals with Down syndrome. Whether or not to use these supplements or medications is a matter to be discussed with your child's doctor.
DSACT Video: "Down Syndrome in the 21st Century"
Parents and healthcare professionals interested in development of individuals with Down syndrome will want to watch DSACT's video "Down Syndrome in the 21st Century." This video profiles individuals with Down Syndrome from infancy through adulthood doing remarkable things and contributing to their families and communities in ways that were not thought possible ten or twenty years ago.
The video is ideal for new or expectant parents, educators, physicians or other healthcare professionals, and the community, and provides a current, first-hand view of individuals with Down Syndrome today.
Email the DSACT yahoo group or post to our Facebook groups with health-related questions. Often another DSACT member will have a resource or suggestion.
Resources on Health
- www.ds-health.com - This site includes Health care guidelines for individuals with Down syndrome. This is a wonderful DS health-related website maintained by a Corpus Christi pediatrician, Len Leshin, M.D., who has a son with DS. Find a wealth of information and resources on this website, as well as abstracts of clinical research articles translated into plain English.
- “Health Care Information for Families of Children with Down Syndrome” was created in July 2013 by the American Academy of Pediatrics (AAP) to give parents and families information about the special health care needs for children with Down syndrome. This document should be used together with the care given by a child’s doctor.
- www.Txp2p.org - Texas Parent to Parent, support and information to families of children with disabilities
- www.ndsccenter.org - National Down Syndrome Congress
- www.ndss.org - National Down Syndrome Society
- http://www.kennedykrieger.org/kki_cp.jsp?pid=1399 - Down Syndrome Clinic at Kennedy Krieger Institute, part of Johns Hopkins Medical Center. The Kennedy Krieger DS Clinic provides comprehensive medical and therapeutic care to individuals with DS; the website lists current Johns Hopkins clinical research studies related to DS. Often the researchers are looking for individuals to participate in the research studies.
- http://www.riverbendds.org - Wonderful, highly-informative and well-indexed website of an Illinois Down syndrome association. Find articles on health, development, education and a host of other topics.
- http://www.ds-asd-connection.org - Well organized dual-diagnosis resource dedicated solely to co-occurring Down syndrome and autism spectrum disorders (DS-ASD).
- https://www.specs4us.com - SPECS4US makes the Erin's World eyeglasses frame, designed by an optician mother of a child with Down syndrome to accommodate the features of children and adults with Down syndrome. These frames are available through several Central Texas-area eye care professional offices.
- https://www.lumindrds.org/lumind-rds-down-syndrome-research-community/ - LuMind Research Down Syndrome Community connects families and caregivers of children and adults with Down syndrome, Down syndrome research experts, resources, and clinical trials.
Funding for medical needs
- http://www.uhccf.org - UnitedHealthcare Children's Foundation is a 501(c)(3) charitable organization providing medical grants to help children gain access to health-related services not fully covered by a child's commercial health insurance plan.
- https://www.varietytexas.org - Variety - The Children's Charity of Texas offers financial assistance and services directly to children with special needs, for medical and educational expenses.
Resources on Down Syndrome Research
- https://www.lumindrds.org - LuMind Research Down Syndrome Foundation
- https://www.dsrf.org - Down Syndrome Research Foundation
- http://dsresearch.stanford.edu - Stanford Center for Research and Treatment of Down Syndrome
Recommended Books About Therapy And Other Issues
Woodbine House is a publisher specializing in books about children with special needs. Our titles within the Special-Needs Collection cover AD/HD, autism, celiac disease, cerebral palsy, Down syndrome, spina bifida, early intervention, inclusion, special education, communication skills, and more.
DSACT does not provide specific medical advice to any individual with Down syndrome. This website provides general health information about Down syndrome. For specific medical questions, contact your healthcare professional.
If you are a healthcare professional, please click below to download: