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----- Forwarded message from susan@... ----- Date: Thu, 12 Mar 2009 13:23:08 -0400 (EDT) From: " Goodman, Director of Governmental Affairs"<susan@...>Reply-susan@... Subject: NDSC Governmental Affairs Newsline info@...You're receiving this email because of your relationship with National DownSyndromeCongress. Please confirmhttp://visitor.constantcontact.com/c.jsp?t=1102502628564.450.321071033.2 & m=1101343243561 & wl=Fyour continued interest in receiving email from us. You may unsubscribehttp://visitor.constantcontact.com/d.jsp?v=001_D6q8SmIH1oFPmJ9_nihIhLI0k4kxy-XXnqrRQ_J_dgsDJRlnjIHxvUbXHKGiS31 & p=unif you

no longer wish to receive our emails.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~National Down Syndrome CongressGovernmental Affairs Newsline~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~March 12, 2009In This IssueSupport the ABLE BillStop Bill the Limits Parents' Rights~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Action NeededTell Congress to Support Savings Accounts for Individuals with Disabilities.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Please send questions or comments to susan@...[mailto:susan@...].::~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Join Our Mailing

List[http://visitor.constantcontact.com/email.jsp?m=1101343243561]~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Dear NDSC Members and Friends,On February 26 and 27th, Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT),Kennedy(D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL),Meek(D-FL), Kennedy (D-RI), and Mc Rodgers (R-WA) introduced the Achieving aBetterLife Experience Act (ABLE) of 2009 (S 493/HR 1205). This bill was formerlyknown as Financial Security Accounts for Individuals with Disabilities (FSAID).If this bill becomes law, it will allow an account to be held in the name ofthe individual with a disability. This is important because currently $2000 is theasset limit for individuals receiving benefits under important federal programssuch as Medicaid and SSI. Medicaid is the primary source of funding

forlong-termsupport services for adults with disabilities. The legislation's intent isto supplementrather than to replace benefits provided by other sources. In addition, moneyearnedon the principal of the trust would not be taxable which means that it can growtax free.The accounts have a contribution limit of $500,000. These accounts will givefamiliesanother tool to use in estate planning along with other mechanisms such as aspecialneeds trust.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Action NeededCall your member of Congress and ask him or her to co-sponsor the Achieving aBetterLife Experience Act (ABLE) of 2009 bill. Some of the talking points are:* This legislation allows for the establishment of tax-exempt financialsecurity accounts for individuals with disabilities to pay for certain expensesnecessaryto help them

live a productive, independent life in the community.* The legislation is important because currently individuals with disabilitieswhoreceive public benefits cannot have more than $2000 in assets and retaineligibility.* The legislation encourages persons with disabilities to save for costlypurchasesthat they would otherwise be unable to purchase with their own funds.You can see the legislation athttp://thomas.loc.gov/cgi-bin/bdquery/D?d111:1:./temp/~bdAYd7:@@@L & summ2=m & |/bss/111search.html[http://rs6.net/tn.jsp?et=1102502628564 & e=001ZhxF_YQRjE1WlTxUxy0uoQCfi33n04GSFtgp6GwR9aScIfb-6Ir-3_dp9EnngANzWuy0wdUim6ncIGoL4UWlCnqH6lJdiyFaEdykgTXf74YwU-Od7o25dHGYHBdgH6FQd9i3IlzvjqsGcavkez8ppG0tdEKdBMpXXYhbiE_-ZoPIbVEYDqSI93wm4NGuUpUZWhpzFtcKGFHNLRppbmtt2U8DXwGOm6MWkpL-zqnKaYRGHO9klie_-j-YNCqEC832]|If your Senator or Representative is interested in signing on as a co-sponsor,theyshould

contact:* McDonough (202-224-6324) in Senator Casey's office.* Krasny (202-225-2501) in Representative Ander Crenshaw's office.You may want to check the list of co-sponsors before calling your Senator andRepresentative.If they are already co-sponsoring the legislation, you should still call themandthank them for doing so. The current Senate co-sponsor list is available atthe above website. To see the list of House of Representative co-sponsors, clickRelatedBills HR. 1205.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Stop Bill That Limits Parents' RightsSummary:On March 3, Rep. Barney (D-MA) reintroduced a bill (H.R. 1255) that wouldlimit the ability of lawyers to protect individuals with developmentaldisabilitieswho live in large group settings. The Voice of the Retarded (VOR) (a parentgroupwho

strongly oppose community placements and want their children to remain inthesesettings), supports this legislation which would limit the ability of theseindividualsto be represented in class action proceedings against institutions.A great deal of the progress for the rights of individuals with disabilities tolive independent and productive lives in the community have been made as aresultof class action lawsuits against states for the denial of individual rights ininstitutions.For example, the "deinstitutionalization movement" began after theresidents ofPennhurst State School and Hospital sued the state in 1980 (Pennhurst StateSchooland Hospital v. Haldemann) stating that conditions at Pennhurst wereunsanitary, inhumane, and dangerous, and that such conditions denied the class members(individualswith developmental disabilities) constitutional and statutory rights. As

aresult,the Court ordered that "community living arrangements" be establishedfor its residents.Pennhurst closed in 1986.Background:This bill was introduced in the 110th Congress. However, because of, in part,theprotest of advocacy organizations like NDSC, no other action was taken. Thisbillwould limit the rights of agencies who receive federal funds, such as the stateProtection and Advocacy agencies for persons with developmental disabilities tofile class action lawsuits against institutions.It is very important that Protection and Advocacy systems are able continuetheirexcellent work on behalf of individuals with disabilities in institutions. Limitingthe rights of these individuals harms all people with disabilities.You can read this bill at

http://thomas.loc.gov/[http://rs6.net/tn.jsp?et=1102502628564 & e=001ZhxF_YQRjE0_owiMQf7dVcUbEWalWFlX1s5-uHDFGcS85ypbc-rSwm5mn0XAvRMw5fbHMT4pVFLDu2n1henX168rdyBRiG8-5pdqh6mbFw0=]To find your Representative, go to www.congress.org[http://rs6.net/tn.jsp?et=1102502628564 & e=001ZhxF_YQRjE1z_QkNuHRFcVRRklttBvqEvKa9RUNB1qxjHx9VJgqG7NJoTDPuUyRUcI9uqoQ_Qc-K7OWKPoYLmV7ac_ZTsRXaE6NuTGZAN3jIspl4OJIZmQ==].Action Needed:Contact your representative and ask him/her NOT to cosponsor or in any waysupportH.R. 1255. Call the capitol switchboard 202-224-3121 and ask for yourRepresentative'soffice.Talking points are as follows:* This legislation is not needed and would harm individuals with disabilities.* It would harm the efforts of parents and advocates to work for communityservicesand support needed to live in the community.*It would limit the efforts of lawyers to represent our

constituency.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~Forward emailhttp://ui.constantcontact.com/sa/fwtf.jsp?m=1101343243561 & ea=info@... & a=1102502628564This email was sent to info@... by susan@....Update Profile/Email Addresshttp://visitor.constantcontact.com/d.jsp?v=001_D6q8SmIH1oFPmJ9_nihIhLI0k4kxy-XXnqrRQ_J_dgsDJRlnjIHxvUbXHKGiS31 & p=ooInstant removal with SafeUnsubscribehttp://visitor.constantcontact.com/d.jsp?v=001_D6q8SmIH1oFPmJ9_nihIhLI0k4kxy-XXnqrRQ_J_dgsDJRlnjIHxvUbXHKGiS31 & p=unPrivacy Policy:http://ui.constantcontact.com/roving/CCPrivacyPolicy.jspEmail Marketing byConstant Contact®www.constantcontact.comNational Down Syndrome Congress | 1370 Center Drive | Suite 102 | Atlanta | GA| 30338----- End forwarded message

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National Down Syndrome Congress

Governmental Affairs Newsline

March 12, 2009

In This Issue

Support the ABLE Bill

Stop Bill the Limits Parents' Rights

Action Needed

Tell Congress to Support Savings Accounts for Individuals with Disabilities.

Please send questions or comments to susan@....::

Dear NDSC Members and Friends,

On February 26 and 27th, Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and Mc Rodgers (R-WA) introduced the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205). This bill was formerly known as Financial Security Accounts for Individuals with Disabilities (FSAID).

If this bill becomes law, it will allow an account to be held in the name of the individual with a disability. This is important because currently $2000 is the asset limit for individuals receiving benefits under important federal programs such as Medicaid and SSI. Medicaid is the primary source of funding for long-term support services for adults with disabilities. The legislation's intent is to supplement rather than to replace benefits provided by other sources. In addition, money earned on the principal of the trust would not be taxable which means that it can grow tax free.

The accounts have a contribution limit of $500,000. These accounts will give families another tool to use in estate planning along with other mechanisms such as a special needs trust.

Action Needed

Call your member of Congress and ask him or her to co-sponsor the Achieving a Better Life Experience Act (ABLE) of 2009 bill. Some of the talking points are:

This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay for certain expenses necessary to help them live a productive, independent life in the community. The legislation is important because currently individuals with disabilities who receive public benefits cannot have more than $2000 in assets and retain eligibility. The legislation encourages persons with disabilities to save for costly purchases that they would otherwise be unable to purchase with their own funds.

You can see the legislation at http://thomas.loc.gov/cgi-bin/bdquery/D?d111:1:./temp/~bdAYd7:@@@L&summ2=m|/bss/111search.html|

If your Senator or Representative is interested in signing on as a co-sponsor, they should contact:

McDonough (202-224-6324) in Senator Casey's office. Krasny (202-225-2501) in Representative Ander Crenshaw's office.

You may want to check the list of co-sponsors before calling your Senator and Representative. If they are already co-sponsoring the legislation, you should still call them and thank them for doing so. The current Senate co-sponsor list is available at the above website. To see the list of House of Representative co-sponsors, click Related Bills HR. 1205.

Stop Bill That Limits Parents' Rights

Summary:On March 3, Rep. Barney (D-MA) reintroduced a bill (H.R. 1255) that would limit the ability of lawyers to protect individuals with developmental disabilities who live in large group settings. The Voice of the Retarded (VOR) (a parent group who strongly oppose community placements and want their children to remain in these settings), supports this legislation which would limit the ability of these individuals to be represented in class action proceedings against institutions. A great deal of the progress for the rights of individuals with disabilities to live independent and productive lives in the community have been made as a result of class action lawsuits against states for the denial of individual rights in institutions. For example, the "deinstitutionalization movement" began after the residents of Pennhurst State School and Hospital sued the state in 1980 (Pennhurst State School and Hospital v. Haldemann) stating that conditions at Pennhurst were unsanitary, inhumane, and dangerous, and that such conditions denied the class members (individuals with developmental disabilities) constitutional and statutory rights. As a result, the Court ordered that "community living arrangements" be established for its residents. Pennhurst closed in 1986.

Background:This bill was introduced in the 110th Congress. However, because of, in part, the protest of advocacy organizations like NDSC, no other action was taken. This bill would limit the rights of agencies who receive federal funds, such as the state Protection and Advocacy agencies for persons with developmental disabilities to file class action lawsuits against institutions. It is very important that Protection and Advocacy systems are able continue their excellent work on behalf of individuals with disabilities in institutions. Limiting the rights of these individuals harms all people with disabilities.

You can read this bill at http://thomas.loc.gov/ To find your Representative, go to www.congress.org. Action Needed: Contact your representative and ask him/her NOT to cosponsor or in any way support H.R. 1255. Call the capitol switchboard 202-224-3121 and ask for your Representative's office.

Talking points are as follows:

This legislation is not needed and would harm individuals with disabilities. It would harm the efforts of parents and advocates to work for community services and support needed to live in the community.

It would limit the efforts of lawyers to represent our constituency.

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This is unconscionable!-----Inline Attachment Follows-----

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5.22.09 Newsline

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National Down Syndrome Congress

Governmental Affairs Newsline

May 21, 2009

Also In This Issue

Community Choice Act

NDSC Activities

May 12 Action Alert

Please send questions or comments to susan@....::

Dear NDSC Members and Friends,

Outrage at Abuse at Texas Institution

Appropriate outrage has been displayed at the abusive and potentially criminal actions of employees of a Texas state institutions for persons with mental disabilities who forced residents into fight clubs for the entertainment of the employees. According to a video released, residents of a Corpus Christi state institution for people with intellectual disabilities were being forced to fight for the amusement of night shift employees.

According to reports, the disturbing videos show residents being kicked and prodded to fight while employees laugh. Residents say they were told they might be beaten or sent to prison if they refused to fight. We have heard from many members who say "how can this happen?

In an interview with EBauer News and Commentary on Disability Issues, Curtis Decker, Executive Director of the National Disability Rights Network states in response to a "How can this happen?" question from Ms. Bauer. Decker states:

"Texas relies on these large facilities with 400 or 500 people each. There's an absolute refusal to consider alternative ways of providing care to these people. They rely on these big congregate facilities that we know from across the country don't work, can't work. Then we get these examples and horror stories of neglect, and they say oh my goodness, what are we supposed to do? It's a complicated question. A lot of forces want to keep these places open.

Traditionally, the organized disability community spent tons of time and energy trying to convince policymakers that these places are outdated, outmoded, dangerous and ought to be closed. And some states have gotten away from using them. A few states, Texas being among the worst, seem to be beholden to certain forces that want to keep them open.

There's lots of forces that want to keep these places open - forces like the intractable bureaucracy. Then there are the unions who have an interest in making sure their members continue to have their jobs. They're a very important force at the state level. And there are family members who think these places are the only place their children can live, which I think is misguided.

There is also a lot of pressure from the community. Some of these places are in depressed and rural areas, and they are like a company town. They can be the only source of business around. So there is a lot of pressure to keep these places open."

(To read the entire interview go to http://www.patriciaebauer.com/2009/03/11/decker-on-texas-institutions/.

Reportedly, the personnel involved in the criminal activity have been charged with felonies in Corpus Christi, Texas. Not only do individuals who commit these outrageous criminal actions need to be prosecuted, states need to be accountable for the ways in which its facilities, paid for with public funding are treating people with disabilities.

Sources tell us that the U.S. Department of Justice is entering into an agreement to upgrade institutions in the state of Texas to ensure the safety of residents. It is critical that the current residents of these facilities are in a safe environment.

However, NDSC has strongly supported passage of the Community Choice Act (HR 1670/S.683) that would give residents of these facilities the opportunity to live in small community settings with the appropriate services and supports. We also strongly advocate for the inclusion of consumer controlled, community based long term supports and services and removal of the institutional bias from Medicaid funding. As a result of the efforts of many national organizations, including NDSC, Congress received over 7500 calls on this issue and initial indications are that the issue will be addressed in health care reform legislation. We need to keep the pressure on! (See May 12th Action Alert below .)

NDSC Activities

NDSC is an active member of the APRAIS coalition, a group of national organizations organized to end the practices of abuse, restraint, seclusion against individuals with disabilities.

As a result of the efforts of these groups, a Governmental Accounting Office (GAO) report conducted an investigation and issued a report on the seclusion and restraint in schools. To read the GAO report, go to: http://www.gao.gov/new.items/d09719t.pdf.

Goodman, NDSC Governmental Affairs director, attended a Congressional hearing convened by Congressman (D.CA), Chairman of the House of Representatives Education and Labor committee which highlighted the seriousness of this problem. The Congressman expressed outrage at the widespread use of restraint, seclusion and abuse in public schools.

To see the witness testimony, go to http://edlabor.house.gov/hearings/2009/05/examining-the-abusive-and-dead.shtml

NDSC is a member of the School Success for All Coalition, a group of national organizations which are working towards the use of Positive Behavior Intervention Supports in all schools.

Part of these efforts include work towards the reintroduction of the Positive Behavior for Effective Schools Act which is expected to happen soon.

NDSC will also be represented at a White House meeting on restraint and seclusion in schools on May 26th. We will report on the outcome of this meeting in a future Newsline.

May 12 Action Alert

Received from the Consortium for Citizens with Disabilities Long-Term Supports and Services Task Force

National Call-In Day May 13:MessageEnsure Long-Term Services and Supports are Included in Health Care ReformBackgroundIn coming weeks, the Senate will finalize legislation to reform America's health care system. Long-term services and supports are essential to individuals with disabilities and seniors and must be included in health insurance reform efforts. Consider the following:

* While over 48 million Americans do not have medical insurance, over 250 million Americans lack any insurance protection for the costs of long-term supports and services. Medicaid requires individuals to impoverish themselves to receive supports.

* There is an institutional bias within Medicaid that denies Americans with disabilities an equal choice for home and community services.

* Hundreds of thousands of individuals with disabilities and their families are on waiting lists for Medicaid home and community-based services.

Proposals exist to help address these issues. However, they will only be included within health care reform legislation if Congress hears from you. Aging and disability organizations have joined together to host a national call-in day on Wednesday, May 13. Please join thousands of others across the country in calling your Senators to tell them how important it is to include long-term services and supports. Your calls can make a difference! Call-In Information

When: Wednesday, May 13 (Between 8AM and 6PM EDT)Call-In Number: 1-866-459-9232 (Toll Free)You will be asked which state you are calling from and will be connected to your Senators' offices.

Below is a sample script to leave a message.Hello (state your name and where you are calling from). I'm calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care.Thank you.

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