Gov. Cuomo's Justice Center Bill Passes Both Houses

Governor Andrew M. Cuomo's Justice Center Bill passed in both the Senate and Assembly. This legislation establishes the strongest standards and practices in the nation for protecting people with special needs and disabilities through the creation of a new Justice Center for the Protection of People with Special Needs. The initiative will transform how New York State protects over one million New Yorkers in State operated, certified or licensed facilities and programs.

In response to the passage of the bill, Governor Cuomo issued the following statement:
“For too many years, we have heard story after story of abuse and mistreatment in facilities that are supposed to care for those with special needs and disabilities. With the legislation passed today, New York is standing up to say enough is enough. The Justice Center for the Protection of People with Special Needs will ensure that the more than one million New Yorkers with disabilities and special needs receive the proper treatment that they deserve. Protecting the civil rights of vulnerable individuals was one of my top priorities this legislative session, and with this new law, New York State has raised the bar to put in place the strongest standards and practices in the nation for protecting people with special needs. I thank the thousands of New Yorkers, including my colleagues in the Senate and Assembly, who joined in the fight to take action and bring justice to the system. Without their help, the passage of this important legislation would not have been possible.”

For more information about the Justice Center, please visit the Governor's Justice Center Website:
http://www.governor.ny.gov/Justice4SpecialNeeds/home

NY State to Propose a State Seal Of Biliteracy for High School Graduates

Following on the heels of the California law that was signed on October 8, 2011 by Governor Jerry Brown that  created the “State Seal of Biliteracy” which honors high school seniors proficient in English and one or more languages, New York State Assemblywoman Carmen E. Arroyo introduced legislation in May 2012 to create a similar certification for New York State high school graduates. This bill would establish the State Seal of Biliteracy to recognize high school graduates who have attained a high level of proficiency in speaking, reading and writing in one or more languages in addition to English. The bill cites many reasons for why this certification should be pursued, including that biliteracy contributes to a pupil’s cognitive development and to our national economy and security. The demand for individuals to be fluent in more than one language is increasing throughout the US, promoting linguistic proficiency and cultural literacy.

The bill proposed by Carmen Arroyo is designed to encourage pupils to study languages other than English, provide employers with a method of identifying people with language and biliteracy skills, offer universities a way to recognize and give academic credit to applicants seeking admission and  to prepare pupils for the new challenges of 21st century life.

Sinergia enthusiastically supports the biliteracy bill and calls upon parents to support this iniaitive by contacting the New York State Legislature. Ms. Arroyo’s New York City Office is located at 384 East 149 Street, Suite 30, Bronx, NY 10455. Her telephone number is 718-292-2901. You can also contact your assemblyperson by visiting the website http://assembly.state.ny.us/mem/ and entering your zip code.

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DOE Finalizes Infant Disabilities Program

The early childhood special education community received welcome news last month that the U.S. Department of Education finalized regulations for IDEA’s Infant and Toddlers with Disabilities Program, known as Part C. IDEA Part C serves more than 340,000 infants, toddlers and their families each year.

The final Part C regulations contain numerous changes and additions, including:
  •  Transition requirements have been revised, including provisions related to notification of the local education agency (LEA) and state educational agency (SEA), timelines, an opt-out policy, the transition conference, and the transition plan.
  •  The 45-day required timeline from referral to the Individualized Family Service Plan (IFSP)  meeting has been retained with the addition of some provisions permitting documentation of extraordinary circumstances for a delay
  •  Natural environment provisions have been revised to reflect the 2004 statutory change.
  •  Changes in the content of the IFSP have been made, including in the “early intervention services” and “other services” components.
  •  Several changes have been made to procedural safeguards, including provisions related to written prior notice, confidentiality, surrogate parents, and dispute resolution.
  •  Changes have been made in provisions related to financial responsibility, systems of payment and ability to pay as well as to the use of public benefits, insurance, and private insurance.
  •  Provisions related to monitoring, enforcement, reporting, and allocation have been included in a new subpart of the Part C regulations.

For a complete list of Part C federal regulations click here.

About IDEA Part C in New York State
The New York State Early Intervention Program (EIP) is part of the national Early Intervention Program for infants and toddlers with disabilities and their families. First created by Congress in 1986 under the Individuals with Disabilities Education Act (IDEA), the EIP is administered by the New York State Department of Health through the Bureau of Early Intervention. In New York State, the Early Intervention Program is established in Article 25 of the Public Health Law and has been in effect since July 1, 1993.

To be eligible for services, children must be under 3 years of age and have a confirmed disability or established developmental delay, as defined by the State, in one or more of the following areas of development: physical, cognitive, communication, social-emotional, and/or adaptive.

 For more information click here.

New Proposed Amendments to IDEA Part B

We received the following notice from the Office of Special Education Programs:

This week the Department of Education released a notice of proposed rulemaking to amend the IDEA Part B regulations.  Changes are being proposed to the regulations regarding when a State or local educational agency seeks to use a child's or parent's public benefits or insurance (e.g., Medicaid) to pay for Part B services.  These proposed amendments to the Part B regulations would ensure the protection of the rights of parents and children and ensure that children with disabilities receive a free appropriate public education (FAPE) while addressing concerns raised by State educational agencies and local educational agencies regarding the burdens imposed by the current regulation. 

Note that the notice of proposed rulemaking has been delivered to the Office of the Federal Register but has not yet been scheduled for publication.  The official version of this document is the document that will be published in the Federal Register in the next couple of weeks. The Part B notice of proposed rulemaking is posted at:

http://www2.ed.gov/about/offices/list/osers/news.html

Sinergia Participates in People First Waiver

The New York State Office for People With Developmental Disabilities (OPWDD), in consultation with the State Department of Health and other stakeholders, has begun to seek programmatic and fiscal reforms to the service system through the development of a new 1115 demonstration waiver, the “People First Waiver”. There have been Listening Forums and  Public Hearings throughout the state to gather input from individuals, family members, providers and stakeholders on how to restructure the current system of care for individuals with developmental disabilities. A steering committee and five design teams have been established to make reform recommendations, and to help plan the roll out of the waiver and its implementation. Myrta Cuadra Lash, Executive Director of Sinergia, has been nominated to serve on the Benefits Design Team that is charged with “making service and supports reform recommendations that enhance person centered planning and service delivery and increase the system’s capacity to serve people in the most appropriate community setting with an equitable level of resources based on the needs assessment process.”  She will contribute to this team’s discussion on specialty populations and the service needs that should be added for people/families who are underserved to successfully participate in the 1115 Waiver. The waiver will transform New York State’s total system of care for persons with developmental disabilities within the next five years. We encourage you to visit the OPWDD website to keep abreast of developments in the People First Waiver and find ongoing information from the design teams.

Essential Services Restored as NYC Budget Passes

The City Council passed New York City's budget for Fiscal Year 2012 (July 1, 2011 - June 30, 2012). Overall, this budget preserves essential services, preventing teacher layoffs, restoring fire companies, day care slots, and library services.  A few of the highlights are below, but please click here for more detailed information.

Restoring Essential Services

In his Executive Budget proposal in May, Mayor Bloomberg proposed a wide range of cuts that would have impacted essential services. The City Council  worked with the Bloomberg Administration to restore many essential services:

• No teacher layoffs, thanks to an agreement between the Council, the City, and the UFT.
• No fire company closures
• Substantial restorations to child care and thousands  of “Priority 5” after-school vouchers for families, albeit at a lower funding level
• Neighborhood public libraries will continue to offer 5-day-a-week service
• Restorations to the Parks Department will mean public pools are open all summer, and we’ll still have playground associate
• The Council also restored many smaller, but still important, programs – like those that help immigrants learn English, prevent homelessness, and offer legal and social services.

Also we are happy to report that the Council’s Autism Initiative was restored, which means Sinergia can continue its services to parents with children with autism. Sadly, even with these restorations, there will still be many painful cuts citywide, including the loss of over 2,500 teaching positions through attrition and the elimination of several thousand summer youth jobs, after-school program slots, small-dollar scholarships to CUNY students and day care slots for low-income working families.

OMIG Legislation Reform

As the economic downturn continues to make federal dollars to not-for-profit agencies serving people with disabilities more and more difficult to attain, federal offices are taking steps to reduce fraud and waste. The Office of the Medicaid Inspector General (OMIG) is the investigation and enforcement arm of Medicaid and is responsible for initiating audits and levying penalties when fraud is uncovered. However, many agencies, not for profit service providers and funding agencies like OPWDD consider OMIG audits to be excessively punitive and over-reaching in their zeal to recover or eliminate funds to said agencies. Advocates for reining in the OMIG have complained that agencies found to be guilty of even the minutest instances of mistaken billing have been too severely reprimanded through the imposing of heavy fines and penalties. While acts of blatant and purposeful fraud need to be uncovered and the guilty punished, the OMIG has been accused of being extremely heavy handed and punitive when meting out judgments for alleged mistakes in billing for reimbursements for delivered services. Additionally, allegations of abusive and dismissive treatment towards staff members, not allowing agencies to repair or correct minor and unintentional episodes of mistaken billing and incomplete explanations of alleged violations, have also been of grave concern to agencies under audit.


Legislation to provide due process protections for providers and recipients of Medicaid who come under the scrutiny of OMIG passed both houses of the Legislature in June. The long awaited measure, also known as OMIG reform, will provide for fair practices, procedures and standards for actions if signed by Governor Cuomo. We will be carefully monitoring this situation and will report any additional developments as they occur.
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How do Homeless Families survive without the Advantage Program?

The Advantage Program is a housing subsidy program for homeless families which began in 2007 and is operated by the NYC Department of Homeless Services (DHS).  Families who go through the shelter system receive a voucher which pays a substantial part of their new rent, making it affordable for people to move to permanent housing (providing a home to house a family is less costly than utilizing the shelter system for the homeless).  This arrangement lasted for two years, during which families were expected to become stabilized, find work and begin paying their own full rent.

Unfortunately, after the two year period, about 51% of the families were unable to pay their unsubsidized rent and subsequently returned to the City’s shelter system.  Because of its high recidivism rate, the Advantage Program has come under attack and the State has proposed eliminating the program completely.  The City responded by ceasing the signing of leases for current shelter families effective March 14, 2011 and will stop rent payments to landlords effective April 1, 2011 (more info on elimination of services).  The termination of the Advantage program will affect New York City families and, in turn, some of the families with disabled children served by the Tier II program and Housing Assistance Program at Sinergia.  We are already feeling the effects, and this is only the tip of the iceberg.

One of our consumers, a mother, along with her non-verbal son with intellectual and developmental disabilities, were living in severely overcrowded conditions. The young boy's behavior in school was affected by this, as was his relationship with everyone in the household. While living under these conditions he regressed substantially and became withdrawn and depressed. The family moved into one of Sinergia’s Tier II apartment, which is meant to be transitional housing until families find permanent, affordable housing. Nevertheless, it provided space for the son to move freely, and he did not have to wait in line to use the bathroom and was able to sleep in his own bed.  His teacher noted his behavior and functional progress had improved remarkably. Once her son was stable, Sinergia helped the Mom to secure a job. She then met the requirements for the Advantage voucher, and she identified an affordable apartment that accepted it. Now this dream is on hold.

Another couple with three children, one with developmental disabilities, came to Sinergia’s Housing offices this week with a letter from DHS informing them that beginning April 1, 2011 they would no longer subsidize their $1,600 rent. The couple is devastated.  A year and a half ago they entered the shelter system and with the help of Sinergia were able to get an Advantage voucher and rent a three bedroom apartment.  The husband works, but doesn’t earn enough to pay the total rent.  They are concerned about returning to the shelter system; they remembered how much their kids suffered because of the conditions and instability of being homeless.

Both families are in limbo, overwhelmed by the lack of affordable housing in the city and what the impact of facing an unknown future will have on their children. We hope the City and the State will find alternatives to the Advantage program because low income families have few options for securing affordable housing in the marketplace. Otherwise we will see the return of families living on the streets or forced into inhumane homeless shelters. Children, especially those with disabilities, will suffer the most from the instability of a family adrift without a home.

UPDATE (3/31/11) - Legal Aid believes these terminations are unlawful and filed a lawsuit on behalf of tenants whose benefits were terminated.  As a result of this filing, the City was ordered to pay Advantage rents for current Advantage tenants for the month of April pending a hearing later this month. (We don’t know if the lawsuit will resolve anything, but we’re hopeful.)


Related resources:
Legal Aid’s flyers with additional information in English and Spanish, from the New Destiny Housing website. 
NYC: 15,000 Ex-homeless Families Losing Rent Help (WSJ)
Updates from the Coalition For the Homeless

Reminder: Deadline for Puerto Rico's New Birth Certificates is Sept. 30

A new law was recently passed that will invalidate all birth certificates issued in Puerto Rico on or before June 30, 2010. It takes effect on September 30, 2010.

This policy was enacted to address the fraudulent use of birth certificates issued in Puerto Rico in order to unlawfully obtain U.S. passports, Social Security benefits and other services. New Yorkers born in Puerto Rico can continue to use their old birth certificates until September 30, 2010.

If you were born in Puerto Rico and use birth certificates as identity documents for program services and other purposes you will need to take action by ordering an updated version of your birth certificate via mail or the Internet.

Additional details can be found in the Puerto Rico Federal Affairs Administration website (also available in Spanish.

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

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.

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.

The Health Reform Bill - what does it mean for the disabled?

On Sunday, March 21, 2010 the U.S. House of Representatives passed the Senate version of the health-care reform bill, the Patient Protection and Affordable Care Act, and two days later President Obama signed it into law. 

Our first question was, "What does it mean for the children and adults with disabilities and their families?"

Here's some of the changes that will take place within six months of the enactment of the bill – or by end of September:

• Insurers would be prohibited from excluding coverage based on pre-existing conditions;

• Insurers would be prevented from selectively refusing to renew coverage;

• Insurers would no longer be able to charge people different premiums based on their health status, gender or occupation;

• A standardized annual out-of-pocket spending limit would be established so that no family would face bankruptcy due to medical expenses;

• Annual and lifetime benefit caps would be prohibited;

• Mental health would be covered;

• “Habilitative” and “maintenance services” would be covered;

• “Behavioral health treatments” would be covered;

• Insurers would be required to keep young adults as beneficiaries on their parents' health plans until they turn 26,

• Insurance companies would no longer be allowed to deny coverage to sick children.

The following changes will not take place until 2014:

• Americans will for the first time be required to carry health insurance — either through an employer, through a government program or by buying it for themselves.

• Tax credits to help pay for premiums will start flowing to families with incomes up to $88,000 a year

• Medicaid will be expanded to cover more low-income people.

"These reforms will allow Americans to achieve full health and recovery through significant investments in expanded health care access, including mental health, substance use, rehabilitation and prevention services, as well as collaborative care and chronic care management," said Laurel Stine, director of federal relations at the Bazelon Center. "This is particularly notable given that four of the ten leading causes of disability in the United States are mental disorders and 87 percent of Americans cite lack of insurance coverage as the top reason for not seeking mental health services,"adds Stine.

What are your biggest concerns regarding healthcare and the disabled? Share them with us!

Sources: Children’s Defense Fund; Associated Press