FAST Project Update

In previous posts we have written about the FAST Project, a project of national significance which Sinergia is partners of along with the PACER Center in Minnesota. Our involvement includes piloting four curricula with parents for feedback and conducting focus groups. We also translate into Spanish the four modules, which include: Working for Change, Getting and Keeping the First Job, The Journey to Adulthood and Skills for Effective Parent Advocacy.

On May 18 and 19, over 220 participants from 107 federally funded parent centers attended a two-day "Train the Trainer" FAST Conference held in Washington, DC. Cassandra Archie (left), co-Director of the Metropolitan Parent Center, co-presented a session on Skills for Effective Parent Advocacy along with Carolyn Anderson from the PACER Center (right). The second day of the conference was designed for participants to meet with their legislators on Capitol Hill. Staff from Parent Centers from New York City met with aides from Senator Schumer’s and Representative Nadler's office, informing them of our center's work and the families we serve.

Brown v. Board of Education: IDEA Disproportionality - How Far Have We Come?

May marked the fifty-six anniversary of Brown v. Board of Education, and while there has been some progress we still have a long way to go. In 1954 Thurgood Marshall argued before the Supreme Court against the false concept of “separate but equal”.  He had no idea that some twenty years later in 1975 his civil rights work, which lead to the results in Brown v. Board of Education, would inspire families of children with disabilities across the United States to push for a law that included their children: P.L. 94.142 The Education of all Handicapped Children Act – 1975, renamed in 1990 to The Individuals with Disabilities Education Act (IDEA) P.L. 101-476.

Like Brown v. Board of education, the hopes and dreams of some parents of children with disabilities who receive services under IDEA have not been realized. Separate settings, low graduation rates, high incident classifications, minimal access to the general education curriculum, and more suspensions and expulsions from school for students of color have created what is known in special education as Disproportionality.  To find out more about Disproportionality and what the research says needs to be done, read "The Truth in Labeling, Disproportionality in Special Education. Tell us what you think about the report and how far we have come since Brown v. Board of Education. We'd love to hear your comments!
Cassandra Archie – MPC Staff

New Co-Director for Sinergia's Metropolitan Parent Center

It is with great pleasure that Sinergia announces the appointment of Cassandra Archie as the new co-director of the Metropolitan Parent Center (MPC), Sinergia’s Parent Training and Information Center (PTI).

Mrs. Archie brings a great deal of experience in PTI operations since she is a former director of the Rochester PTI. She has collaborated with Sinergia for over 10 years and has led training and staff development initiatives and has performed duties as the coordinator of the MPC since 2006. Cassandra is very well respected statewide and nationally as a trainer and on issues of disproportionality in special education. She has been a consultant with the NYS Department of Education and in the Ohio "Close the Gap" Campaign for Sen. C.J. Prentis. Additionally, she possesses great skills and sensitivity since she is a parent of a son with disabilities. We look forward to her further contributions and her leadership of the Metropolitan Parent Center.

Expanding the Limits for SSI Eligibility

Congresswoman Tsongas (D-MA), along with Congressman Petri (R-WI), introduced the SSI Savers Act of 2010 (H.R. 4937), proposing to reform the asset test in the Supplemental Security Income (SSI) program, the primary provider of subsistence cash to extremely low-income individuals, seniors and people with disabilities.

In general, eligibility for SSI is limited to those who have no more than $2,000 in assets for an individual and $3,000 for a couple. The SSI test also generally counts all resources deemed accessible to an individual, including defined-contribution retirement accounts, such as 401(k)s and IRAs, as subject to the asset limit.

The current SSI asset test discourages many people with disabilities from working regularly or saving money for fear of losing their benefits. Many people with disabilities and their advocates consider these limits extremely outdated as they force vulnerable individuals to deplete or spend down their savings, thereby limiting their independence, economic security and financial self-sufficiency.

H.R. 4937 proposes to remove savings disincentives in SSI by:

• Raising the asset limit to $5,000 (from $2,000) for a single and $7,500 (from $3,000) for joint filers and index these limits for inflation.
• For non-institutionalized individuals under the age of 65, excluding retirement savings from inclusion in the asset test.
• For non-institutionalized individuals age 65 or older, excluding savings in qualified retirement accounts below a specified ceiling of (indexed for inflation) $10,000 for an individual and $15,000 for a couple or household (indexed for inflation) and potentially treating excess savings in these accounts as an additional asset or alternatively as an imputed income stream.
• For non-institutionalized individuals age 65 or older, disregarding one-third of the funds drawn down from retirement accounts when calculating household income.
• Removing the requirement that SSI recipients, if eligible, must apply for periodic payments from their retirement savings.
• Excluding Education Savings Accounts and Individual Development Accounts funded all or in part with federal dollars or defined in federal programs for those under age 65.

SSI asset limits are set by the federal government, which gives Congress the direct ability to reform the guidelines of the program's asset tests.

Summer Camps for Children With Disabilities

With summer fast approaching, it is time to think about sending your child to summer camp. Please be advised that in addition to the camp’s fee for services for the summer, they may also charge you an additional registration fee. This fee is generally $50 and covers the administrative paperwork needed to enroll your child and collect all of the necessary paperwork.

 

The following agencies offer camp accommodations for children with developmental disabilities.

• AMAC – Association for Metro Area Autistic Children, (212) 645-5005
• AHRC – NYC,  (212) 780-2585
• Camp Hope, (845) 225 2005, ext. 207
• Jened Recreation Village, (UCP NYS) (845) 434-2220
• Wagon Road Camp (The Children’s Aid Society), (914) 238-4761
• Ramapo Camp, (212) 836-1840
• YAI, (212) 273-6298 

When considering camps for your child, please keep the following tips in mind.

• Attend camp fairs and register early.  Generally, these fairs are held in January.
• Apply early for financial aid and family reimbursement.
• Please have updated medical, PPD and psychological evaluations ready for early submissions.
• Ask for and attend a tour of each camp that you may be considering. 
• Ask for and check references.
• Make sure that the camp is fully capable of addressing your child’s particular needs (medication, diet, treatments, etc.).
• Please do not feel the need to send your child to camp with all new clothes.  Your child will be attending camp to engage in outdoor fun and games that may result in clothes becoming very dirty and possibly torn.   

Camp can be a wonderful opportunity for your child to enhance his/her socialization skills.  Every child should be given the chance to experience all of the activities that camps have to offer.  For further information or questions, please feel free to call us at 212-643-2840. 

Faster Disability Application will Benefit Thousands

By Elizabeth Wertime, Social Security Public Affairs Specialist in Albany, NY

Tens of thousands more people will benefit from a faster and more efficient process when applying for disability benefits, thanks to an expansion in Social Security’s Compassionate Allowances.

Compassionate Allowances are a way of quickly identifying diseases and other medical conditions that clearly qualify for Social Security and Supplemental Security Income (SSI) disability benefits — allowing for faster decisions in the most obvious cases.

Michael J. Astrue, Commissioner of Social Security, announced 38 more conditions that are being added to the Compassionate Allowances list. This expands the original list of 50 conditions (25 rare diseases and 25 cancers) that was announced in October 2008. The new conditions range from adult brain disorders to rare diseases that primarily affect children.

“The addition of these new conditions expands the scope of Compassionate Allowances to a broader subgroup of conditions like early-onset Alzheimer’s disease,” Commissioner Astrue said. “The expansion we are announcing today means tens of thousands of Americans with devastating disabilities will now get approved for benefits in a matter of days rather than months and years.”

In developing the expanded list of conditions, Social Security held public hearings and worked closely with the National Institutes of Health, the Alzheimer’s Association, the National Organization for Rare Disorders (NORD), and other groups.

"The diagnosis of Alzheimer's indicates significant cognitive impairment that interferes with daily living activities, including the ability to work," said Harry Johns, President and CEO of the Alzheimer's Association. "Now, individuals who are dealing with the enormous challenges of Alzheimer's won't also have to endure the financial and emotional toll of a long disability decision process."

“This truly innovative program will provide invaluable assistance and support to patients and families coping with severely disabling rare diseases,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD). “On behalf of those patients and families, I want to thank Commissioner Astrue and his enthusiastic team for creating and now expanding a program that will have a direct impact on the quality of life of thousands of individuals."

“We will continue to hold hearings and look for other diseases and conditions that can be added to our list of Compassionate Allowances," said Commissioner Astrue. “There can be no higher priority than getting disability benefits quickly to those Americans with these severe and life-threatening conditions.”

To learn more, and to see a complete list of the 38 new conditions, read the press release at www.socialsecurity.gov/pressoffice/pr/cal021110-pr.html.

For a complete list of the 88 Compassionate Allowance conditions, visit www.socialsecurity.gov/compassionateallowances.

Get up-to-date information about Social Security's Programs and benefits @ www.socialsecurity.gov

Will the reauthorized "No Child Left Behind" help students with disabilities?

The "No Child Left Behind" Act, which requires states to develop tests in basic skills to be given to all students in certain grades in order to receive federal funds for schools, was signed into law in 2002 and provides the largest amount of funding to schools through Title I. Under the 2002 act, students with disabilities were listed among the five sub-groups schools were required to report performance on.

On March 15, President Obama released "A Blueprint for Reform, The Reauthorization of the Elementary and Secondary Education Act," which is basically "No Child Left Behind." It appears the new administration will use the Elementary and Secondary Act and not "No Child Left Behind" when referring to the reauthorization. Among the five cross-cutting priorities listed in the Blueprint for Reform is Supporting English Learners and Students With Disabilities:

“Schools, districts, and states must be held responsible for educating all students, including English Learners and students with disabilities, to high standards, but more work could be done to develop and scale up effective strategies for these students. Priority may be given to programs, projects, or strategies that are designed to specifically improve the performance of English Learners or students with disabilities.” 

(Click here for the full text: A Blueprint for Reform, The Reauthorization of the Elementary and Secondary Act).

According to the Washington Post article "The administration keeps the right principles in amending No Child Left Behind", the administration has embraced the principals of accountability, disaggregating data, which means that students with disabilities should remain a sub-group for accountability reporting. The administration's plan would scrap the much-maligned adequate yearly progress reports of schools for a new accountability system requiring that all students by 2020 be on a path toward college and career readiness, although this goal is more aspirational than definitive. Students would still be tested every year in math and reading, but other measures, such as graduation rates or scores in other subjects, could factor into the picture of a school's success. Schools would be judged by how much progress students make year by year. Secretary of Education Arne Duncan is set to testify on these matters before Congress the week of March 22.