RESOURCES

First Steps – Early intervention program serving children from birth to age three years old who have a developmental delay or a physical or mental condition that may cause a delay in development. Services include, but not limited to, evaluation of the child’s development, home visits, and an individual family services plan (IFSP). For more information contact the First Steps Program at (800) 442-0087 or visit www.chfs.ky.gov/dph/firststeps.htm .

Accessible Respite Care – Consists of short term and temporary care to families with members who have disabilities, so that the caregivers and other family members can take a break from their daily routine of care giving.

The Kidz Club – A medical daycare for those children unable to attend a typical daycare because of medical conditions who require daily nursing care and medical supervision. For more information visit www.thekidzclub.com .

Icing Smiles – Provides custom celebration cakes and other treats to families impacted by the critical illness of a child. For more information visit www.icingsmiles.org .

The Center for Courageous Kids (CCK) - A world-class medical camp, in Scottsville Kentucky, at no cost to families designed specifically for children living with medical challenges. CCK encompasses an on-site medical center with helipad, indoor aquatic complex, equestrian riding area, bowling alley, gymnasium, climbing wall, boating, fishing, theater, four camper lodges and so much more. Offering weekend retreats for ill children and families and summer camping sessions designed especially for courageous kids. For more information visit www.thecenterforcourageouskids.org


INSURANCE / FINANCIAL INFORMATION

For some, the insurance battle has been one of the hardest battles of their journey with Congenital Heart Disease.  We hope that these resources provide you some assistance in your journey.

Insure Kids Now – Learn about programs offered in your state for more information visit www.insurekidsnow.gov or call (877) KIDS-NOW.

KyHealth Choices (otherwise known as Kentucky Medicaid) – Health coverage for children, families, pregnant women, the elderly, and people with disabilities which meet the eligibility requirements.  For more information visit the Kentucky State Medicaid Web site at www.chfs.ky.gov/dms/kyhealthchoices.htm or call (800) 635-2570.

Kentucky Children’s Health Insurance Program (KCHIP) – Free or low-cost health insurance for children younger than 19 without health insurance. KCHIP eligibility is determined using the Modified Adjusted Gross income and family size based on the tax filing unit of the household. For more information visit the K-CHIP website at www.kidshealth.ky.gov/en/kchip .

Consumer Directed Option (CDO) – Allows waiver eligible members to choose a provider for their non-medical waiver services, allowing them greater freedom of choice, flexibility, and Resources for Children with Congenital Heart Disease control over their supports and services. Members can choose to direct all or some of their non- medical waiver services. For more information visit www.chfs.ky.gov/dms/Consumer+Directed+Option.htm or call (877) 293-7447.

Supplemental Security Income (SSI) – A Federal Income supplement program funded by general tax revenues (not Social Security taxes).   It is designed to help aged, blind, and disabled people, who have little or no income by providing money to meet basic needs for food, clothing, and shelter. For more information visit www.ssa.gov/ssi or call (800) 772-1213.

Division of Community Alternatives - If you are elderly, have a physical, intellectual or developmental disability or are ventilator dependent, you may qualify for Medicaid waiver services. Known as 1915(c) Home- and Community-Based Services waivers, these services provide the support you need to continue to live at home. For more information visit https://chfs.ky.gov/agencies/dms/dca/Pages/default.aspx or call (855) 459-6328.

Michelle P Waiver - A home and community based waiver of the Kentucky Medicaid program developed as an alternative to institutional care for people with intellectual or developmental disabilities. The waiver allows individuals to remain in their homes with services and support. For more information visit https://chfs.ky.gov/agencies/dms/dca/iddcsb/Pages/mpw.aspx.


What is the Kentucky Newborn Screening Program

and

why is it important?

Pulse Oximetry is an initial screening tool for Critical Congenital Heart Disease (CCHD). Hospital administrators, birthing facilities, and medical personnel caring for newborns ages 28 days or less are required by law to assure that every infant in their care receives a pulse oximetry newborn test. The detection of CCHD’s increases to around 85% before hospital discharge with the use of a Pulse Oximetry as a part of an infants newborn screen.

Pulse Oximetry:

Measures the oxygen saturation of the blood;

Is non-invasive and painless;

Is accurate and reliable;

Is fast and easy to perform; and

Is inexpensive.

Pass

If the baby passes the screen (also called “negative” or “in-range” result), it means that the baby’s test results did not show signs of a low level of oxygen in the blood. A baby that passes the screen is unlikely to have a critical CHD. However, not all babies with a critical CHD will have a low level of oxygen in the blood that is detected during newborn screening. Thus, it is possible for a baby who passes the screen to still have a critical CHD or other CHD.

Fail

If the baby fails the screen (also known as “positive” or “out-of-range” result), it means that the baby’s test results showed low levels of oxygen in the blood, which could be a sign of a critical CHD. This does not always mean that the baby has a critical CHD but could mean that more testing is needed. There may be other causes, such as breathing problems, for low levels of oxygen in the blood. The baby’s doctor might recommend that the baby get screened again or have more specific tests, like an echocardiogram (an ultrasound picture of the heart), to diagnose a critical CHD.

For more information visit https://www.cdc.gov/ncbddd/heartdefects/cchd-facts.html.


Knowing the difference between a CHD and a CCHD

A Congenital Heart Defect (CHD) is the most common congenital disorder in newborns. Critical CHD, occurring in around 25% of those with CHD, is defined as requiring surgery or catheter based intervention in the first year of life. Listed below are 7 CCHD’s:

  1. Hypoplastic Left Heart Syndrome (HLHS)

  2. Tricuspid atresia

  3. Pulmonary atresia

  4. Tetralogy of Fallot (TOF)

  5. Total anomalous pulmonary venous return (TAPVR)

  6. Transposition of the Great Arteries (TGA)

  7. Truncus Arteriosus

Other heart defects can be just as severe as these seven and also require treatment soon after birth. However, pulse oximetry screening may not detect these heart defects as consistently as the seven listed above.



How to become your child’s best advocate