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Advocacy, Special Needs Education, Medicaid, Title V Links

One part of having a child with hypotonia is dealing with advocating for your child. In the US, there are laws that protect and support individuals with disabilities and most hypotonic children are protected by these laws. Services are available to support your child through early intervention for children birth to three and through the local school district for children older than three. These services can include physical therapy, occuaptional therapy, and speech therapy. Also, there are private, non profit organizations that can help with support, equipment, and more.

Tremendous thanks to Holly and Anna's Aunt Jeannette for providing all the links on this page!  I'm sure many parents will benefit from your hard work and research--thank you so much!

IDEAPractices website. Information about the Individuals with Disabilities Education Act and how it applies to children.

Directory of (US) state title V CSHCN programs Eligibility Criteria and Scope of Services

CSHCN stands for "Children with Special Healthcare Needs" and refers to the fifth section of the Social Security Act which provides, among other things, states with block grants to administer healthcare programs to children with special healthcare needs. Each state has its own criteria and some states have other kinds of healthcare programs for children that are not a part of CSHCN. For example, where we live, there is a disability waiver program that provides disabled children with medicaid based on the child's income and not the parents. So, if your child is not eligible under CSHCN, don't assume that that is the end of the road. Inquire at your local medicaid office if there are other kinds of eligibility for your child's special needs.

"What is Title V and How Can it Help You?" An introduction to State Title V Programs for CSHCN, by John Reiss

A page of links to all US state medicaid websites.

SSA Publication No. 05-10026 August 2001: Benefits for Children with Disabilities.

This booklet is written primarily for the parents and caregivers of children with disabilities and adults disabled since childhood. It illustrates the kinds of Social Security and Supplemental Security Income (SSI) benefits a child with a disability might be eligible for and explains how social security evaluates disability claims for children.

Information on low cost health insurance for children.

Your children may be eligible for free or low-cost health insurance! Kids that do not currently have health insurance are likely to be eligible, even if you are working. The states have different eligibility rules, but in most states, uninsured children 18 years old and younger whose families earn up to $34,100 a year (for a family of four) are eligible. This is an underutilized federal program managed by state governments. It is worth checking out for your kids. Go to this website and follow the link to your state to find out the details of the program in your area.

The National Center on Secondary Education and Transition (NCSET)

The National Center on Secondary Education and Transition (NCSET) coordinates national resources, offers technical assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures

The Administration on Developmental Disabilities

The Administration on Developmental Disabilities
ensures that individuals with developmental disabilities and their families participate in the design of and have access to culturally competent services, supports, and other assistance and opportunities that promotes independence, productivity, and integration and inclusion into the community.

This site lists links to each states program for the Administration on Developmental Disabilities. Find your state's website.

The Federal Interagency Coordinating Council (FICC)

The FICC serves as the mechanism to facilitate coordination of federal resources to ensure that young children (birth to age 5) with, or at risk for, disabilities and their families get the early intervention and preschool services and supports that they need.  There are lots of great links on this website.

The Families and Advocates Partnership for Education

The Families and Advocates Partnership for Education (FAPE) project is a strong partnership that aims to improve the educational outcomes for children with disabilities. It links families, advocates, and self-advocates communicating the new focus of the Individuals with Disabilities Education Act (IDEA). The project represents the needs of 6 million children with disabilities.

FAPE is one of four projects funded by the U.S. Department of Education to reach parents, administrators, service providers, and policymakers nationwide with information about implementing IDEA '97.

A primary goal of IDEA '97 is to ensure that children with disabilities receive a quality education. The new IDEA shifts the focus of the previous law from providing access to education to improving results for children with disabilities.

This is a straightforward, easy to navigate website that answers the fundamental questions about IDEA in layman’s language.

Parent Advocacy Coalition for Educational Rights

The mission of PACER Center is to expand opportunities and enhance the quality of life of children and young adults with disabilities and their families, based on the concept of parents helping parents.

With assistance to individual families, workshops, and materials for parents and professionals, and leadership in securing a free and appropriate public education for all children, PACER's work affects and encourages families in Minnesota and across the nation.  While this website’s primary mission is to help Minnesota parents, lots of links to quality information about federal law as it related


Click on IDEA97 at the bottom of the navigator links on the left.   Sections on this website that describe the IDEA (Individuals with Disabilities Act of 1997 and subsequent addendums and rulemaking) are more focused on educating states and local school districts (called LEAs).  However, if you are going to be a successful advocate for your child in the educational system it is good to understand what regulations are dictated by the federal government, the state government, and what rules are local rules.  Federal rules are almost impossible to change but local and sometimes state rules are often interpretations of the law and can be lobbied against.

Input Your Ideas and Experiences to the House Committee Reauthorizing the IDEA Legislation

The US House of Representatives is soliciting comments from the public on the IDEA legislation and how it should be changed when it is reauthorized.  Don’t be shy.  Go to their website and tell your personal story about the education system and what is working or not working for your child. 


It won’t be clear for a while where the 108th Congress will sit on reauthorization, but it never hurts to put your comments in as soon as possible.

The National Association of State Directors of Special Education

This organization represents the your state director for Special Education in the legislative process.  As an organization they provide up to date evaluation of impact of new legislation. 


The No Child Left Behind (NCLB) legislation is the single largest reform of basic education in a number of decades.  The NASDSE site has an evaluation of the impact of NCLB on IDEA. 

The Council for Exceptional Children

The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. CEC advocates for appropriate governmental policies, sets professional standards, provides continual professional development, advocates for newly and historically underserved individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

While focused mostly on the professional community, the website offers many great resources for interested parents.  ERIC resources provide overview and access to some of the most up to date research on education and disabilities.

Please visit us on the Child Hypotonia Board on the Parents Place section of iVillage!

Click here to visit the Child Hypotonia Board