Enewsletter 2009Mar

Registering with MH/MR-Call 610-278-5666 and tell them you want to find out how to register your child with MH/MR. I was told he had to have an IQ test (which they do not provide) and had to have an IQ of 70 or lower and be significantly delayed in two areas of development. The woman suggested asking the school to do IQ, which I don’t think will happen in preschool, so she said I could send a copy of the IU evaluation and maybe they could make a determination that way. She is sending me a packet to explain everything. I’ll keep you posted. If anyone knows more about registering and why we need to register, please share with the group.
MH/MR has just changed their name to Montgomery County Department of Behavioral Health and Developmental Disabilities. They are having an informational session on Thursday, March 26, 2009, 6:30 pm at Ken-Crest, 21 Robinson Street, Pottstown, PA. "This information session is designed for consumers and families to learn about the supports and services for individuals with developmental disabilities."

Phone: 610-278-3642

www.montcopa.org
Toilet Training Help-I have not found specific info on who to call for this, but one parent who had it in their IEP said they had to prove they had been trying for over a year and the child had to be over five. If anyone has specific info on who to contact for potty training help, please share with the group.
Respite/Babysitting- www.indcreek.org Respite services come in two types: In-home for families who want their family member cared for in their own home, and Host Family for families who want their family member cared for in the home of the Respite Care Provider. Respite Care Providers are individuals who provide quality service after undergoing an interview with the Respite Specialist and successfully passing a child abuse and criminal clearance screening. FBI fingerprint screening is also required.
Families who have waiver services should contact their Support Coordinator for information on registering with Indian Creek. Community families should contact us for an application. There is a $50.00 registration fee and an annual maintenance fee of $25.00. Fees for provider services are paid directly to the provider by the family. The fees range from $8.00-$11.00 per hour and $65.00-$85.00 per day. Check with your Supports Coordinator as there may be Family Driven Funds available to help pay for Respite Care Services. For more information or an application for services, please call the Respite Specialist (267) 203-1500 extension 129.
Changes due to new budget-Scroll down to the “politics” section of this newsletter for information from NDSS and NDSC on how the new budget will affect life for people with disabilities and their families.
ESY (Extended School Year) Explanation- http://www.nfb.org/images/nfb/Publications/fr/fr27/1/fr270115.htm General feeling from group members whose kids have had ESY throughout their schooling is that it is necessary for our kids and can be fought for. If your child is not qualifying, ask the superintendent why.

2009 has been off to a busy start for the NDSS National Policy Center . A major issue has been the stimulus package. The good news is that IDEA funding will receive a $12.2 billion boost. NDSS has been active behind the scenes and signed on to a letter distributed by COPAA (Council of Parent Attorneys and Advocates) to ensure that a harmful provision from the Senate bill to waive important protections for IDEA funding was not applicable to these funds. It was eliminated in the bill signed by the President.

Stephanie Smith Lee has been appointed by the U.S. Department of Education to serve on the Higher Education Opportunity Act (HEAO) negotiated rule making team that will develop HEOA regulations that allow students with intellectual disabilities to access work study jobs and federal grants.

Worked with the NDSS Clinical Advisory Board to re-draft clinical care legislation.

Spearheaded the organization with a roundtable on employment policy and barriers cosponsored by the Department of Labor and the Collaboration to Promote Self-Determination (CSPD) for people with intellectual disabilities.

Worked with the CSPD to develop an outline of legislation that will remove barriers to employment and self-determination.

Worked with the Down Syndrome Association of Northern Virginia and other groups to iron out legislative differences so that a new version of the Financial Security Accounts for Individuals with Disabilities Act can be introduced in the House and Senate.

Prepared for Advocacy Day and other presentations for the Affiliates in Action conference. Prepared and testified at the Congressional Down Syndrome Caucus hearing which was focused on issues of major importance to children and adults with Down syndrome and their families across the lifespan. Click here to read the testimony

Testified before the National Assessment Governing Board about the need for an alternate assessment to the NAEP (National Assessment on Educational Progress) as one means of addressing the exclusion of student with cognitive disabilities from this assessment.

Conducted media interviews with the Wall Street Journal, Washington Post, U.S. News and World Report, LRP Publications and Education Week.

Developed a political action strategy to focus on appropriations for the Kennedy-Brownback legislation and the Higher Education Opportunity Act.