Parent Resources & Other Links

American Academy of Pediatrics – Developmental Milestones by 12 Months
http://www.healthychildren.org/english/ages-stages/baby/pages/Developmental-Milestones-12-Months.aspx?nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3a+No+local+token

National Dissemination Center for Children with Disabilities
http://www.nichcy.org/Disabilities/Milestones/Pages/Default.aspx

National Network for Child Care – 3, 6, and 12 Month Milestones
http://www.nncc.org/Child.Dev/mile1.html

National Network for Child Care – 18 and 24 Month Milestones
http://www.nncc.org/Child.Dev/mile2.html#anchor789390

Center for Disease Control and Prevention
http://www.cdc.gov/ncbddd/autism/actearly/

Government Resources – “Early Intervention Programs”

When we learned Lynn would need physical therapy, we contacted our insurance company to confirm the physical therapy services would be covered.  We were disappointed to learn that our family’s health insurance through Patrick’s employer would be of little help to cover the costs of Lynn’s physical therapy (over $800 per month). 

When we mentioned this insurance coverage issue to one of our doctors, she suggested contacting “Babies Can’t Wait”, Georgia’s statewide Early Intervention Program which assists children with developmental delays and disabilities.

We contacted Babies Can’t Wait to see if Lynn’s condition, and our insurance and financial circumstances, allowed us to qualify for services and financial assistance through the program.  In a matter of a few weeks, the program had completed Lynn’s physical assessment, a review of our insurance and income circumstances, and all the rest of the qualification process.  In addition to setting us up with a great physical therapist, the program ended up covering a substantial portion of the physical therapy costs.

Each State has its own Early Intervention Program similar to Babies Can’t Wait, and all the programs are funded by the Federal Government under the Individuals with Disabilities Education Act of 2004 (IDEA).  IDEA provides federal funding to each State’s Early Intervention Program which assist children with disabilities, developmental delays or risks of developmental delay up to the age of three.  For 2009, the federal government has appropriated $436 million to fund Early Intervention Programs across the country.  Each State’s program is a little bit different, but they all fall under the same general rules of Part C of IDEA which coordinates and funds services to assist children with physical, social, cognitive, communication and feeding delays.  Some common services provided under state Early Intervention Programs include, for example, physical therapy, occupational therapy, speech therapy, audiology services, nutrition services and social work services. 

• For information about the categories of disabilities under IDEA, visit:

http://www.nichcy.org/Disabilities/Categories/Pages/Default.aspx

• For contact information for agencies and programs in your State including programs for infants or toddlers with disabilities or development delays, visit the National Dissemination Center for Children with Disabilities at:

http://www.nichcy.org/Pages/StateSpecificInfo.aspx

•  For an excellent explanation of Early Intervention Services (0 – 3 years) and Special Education Services (3 – 5 years), read this publication by the National Dissemination Center for Children with Disabilities:

A Parents’ Guide: Finding Help for Young Children with Disabilities
http://www.nichcy.org/InformationResources/Documents/NICHCY%20PUBS/pa2.pdf

• For a parent friendly website that provides easy to understand definitions of medical conditions, take a look at the Encyclopedia of Children’s Health at:  http://www.healthofchildren.com/index.html

Parent Support Groups and Networks

It can be very difficult to adjust to the reality of your baby’s developmental delay or possible permanent disability, and it requires time and support from others.  It can be upsetting to watch other children, the same age or even much younger than your baby, running around while your baby sits and watches.  Oftentimes parents with children that have developmental delays find that the people they turn to first, their family and friends, are unable to provide the support and understanding needed.  Sometimes family members and friends, in an attempt to show support or cheer you up, may suggest or even argue emphatically that your baby’s delayed development is nothing to be concerned about and it is perfectly normal.  Despite good intentions, this feedback is not always helpful or constructive.  It can be extremely beneficial to find and communicate with other parents in similar situations. 

• Parent to Parent programs are available in each State and provide emotional and informational support to families of children with special needs.  Your State’s Parent to Parent program can match you with a trained ‘Support Parent’ who has experience with the same or a similar situation. 

Parent to Parent USA- http://www.p2pusa.org/

• Family Voices programs promote family-centered care for all children and youth with special health care needs and/or disabilities.  The organization has a national network that provides families with tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

 
Family Voices – http://www.familyvoices.org

• The Hypotonia HOPE Group and the iVillage Hypotonia message board are online resources for parents looking for direction, encouragement, and support to help them through the hardships of discovering and coping with a special-needs child whose main presenting symptom is Hypotonia / low muscle tone.

Hypotonia Hope Group – http://health.groups.yahoo.com/group/hypotoniahope/

iVillage Hypotonia message board – http://messageboards.ivillage.com/iv-ppchdhypoton

• For detailed lists of diseases and conditions that can cause hypotonia, take a look at the web sites below.

 Institute of Genetic Medicine at Johns Hopkins

http://www.hopkinsmedicine.org/geneticmedicine/Clinical_Resources/Hypotonia/Diseases.html

Other Organizations and Resources

Shriners Hospitals for Children

• Shriners Hospitals for Children is a one-of-a-kind international network of 22 hospitals dedicated to providing specialty pediatric care, innovative research and outstanding teaching programs. Children up to age 18 with orthopaedic conditions, spinal cord injuries and other conditions are eligible for admission and receive care at no charge – regardless of financial need or relationship to a Shriner.

http://www.shrinershq.org/Hospitals/Main/