Contact Majority Leader Kevin McCarthy to Bring the ABLE Act for a Vote!

Down Syndrome Advocates:

We need your help TODAY!

Please call and email Majority Leader Kevin McCarthy asking him to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) to a vote under suspension next week!

Contact Majority Leader Kevin McCarthy for his support! Call-in script and email template provided below.

Majority Leader Kevin McCarthy:
Leadership Office: (202) 255-4000
Email: https://kevinmccarthy.house.gov/contact/email-me

Email Template

TALKING points

-I'm calling to ask Majority Leader Kevin McCarthy to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) under suspension next week.

-As Majority Leader, we need his leadership to bring the MOST BIPARTISAN BILL up for a vote - the ABLE Act has 85% of the ENTIRE CONGRESS COSPONSORING IT - with 74 Senators and 381 Representatives cosponsoring.

-The House Ways and Means Committee already unanimously voted the ABLE Act out of committee.

-The Senate Finance Committee held a hearing on the bill and, in September, issued a press release outlining their intention to being the ABLE Act to a vote once Congress returns from recess and after the election.

Achieving a Better Life Exeperience (ABLE) Advances in the 113th Congress

from the NDSS and Digital Journal:
Subcommittee on taxation and IRS Oversight of the US Senate Committe on Finance Will Convene a Congressional Hearing on NDSS' Top Legislative Priority, #PasstheABLEact, and NDSS Board Member Sara Wolff Set to Testify
WASHINGTON, July 21, 2014 /PRNewswire/ -- Sara Wolff, a board member and self-advocate from the National Down Syndrome Society (NDSS), will testify before the Subcommittee on Taxation and IRS Oversight of the US Senate Committee on Finance on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647). The hearing, "Saving for an Uncertain Future: How the ABLE Act can Help People with Disabilities and their Families", will take place on Wednesday, July 23, 2014, at 10 a.m., in 215 Dirksen Senate Office Building.
Wolff is a 31-year-old young woman with Down syndrome from Moscow, Pennsylvania, and has been a board member of NDSS since 2007. Earlier this year, Wolff authored a change.org petition calling on members of Congress to pass the ABLE Act in the 113th Congress. Wolff's petition has earned the support of over 250,000 people around the country.
In addition to Wolff, the Congressional panel will also include Congresswoman Cathy McMorris Rodgers, Member of Congress (R-Washington), U.S. House of Representatives, Spokane, Washington and mother to Cole, who happens to have Down syndrome; Robert D'Amelio, Parent and Advocate, Autism Speaks, Charlotte, North Carolina; and Chase Alston Phillips, Financial Advisor, Alexandria, Virginia.
"Just because I have Down syndrome, that shouldn't hold me back from achieving my full potential in life," Sara Wolff said. "I can work a full-time job, be a productive member of society, and pay taxes – but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life. It's time that Congress act and pass the ABLE Act."

June 12th National Call-In Day for the Keeping All Students Safe Act

from the NDSS:
Join NDSS and other national organizations today, June 12th for National Call-In Day to ask your Senators and Representative to cosponsor the Keeping All Students Safe Act (S. 2036/H.R. 1893) which aims to end the practice of using restraint and seclusion as punishment or convenience. 
Restraints and seclusion have killed, injured, and traumatized students in schools across the country.  The Keeping All Students Safe Act, championed by Senators Tom Harkin (D-IA) and Chris Murphy (D-CT) and Representatives George Miller (D-CA) and Gregg Harper (R-MS), promotes a shift toward preventing problematic behavior through the use of de-escalation techniques, conflict management, and evidence-based positive behavioral interventions and supports. NDSS strongly supports this legislation.

Please call your members of Congress tomorrow by clicking the TAKE ACTION button below, and ask your Senators and Represenative to cosponsor this important legislation!

For more information about the Keeping All Students Safe Act, please visit our ​NDSS Restraints and Seclusion in Schools webpage.
Thank you for all you do!

Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Transition and Postsecondary Programs for Students with Intellectual Disabilities in Jeopardy

from the NDSS:

The Senate Labor-Health & Human Services (L-HHS) Subcommittee marked up their fiscal year (FY) 2015 appropriations bill this week and appropriated $12.718 million for the Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) program, a program that NDSS fully supports!

We still need your help! Please contact members of the House and Senate Appropriations Committee (using the "Take Action" link below) to ensure that the funding for the FY 2015 TPSID program is included in the Senate full-committee appropriations bill (scheduled for Thursday, June 12th) and in the House L-HHS appropriations bill.

NDSS feels strongly that students with Down syndrome and other disabilities should have access to postsecondary education, and the resulting employment and independent living opportunities.

Congress must support the TPSID program and NCC to ensure that thousands of students with intellectual disabilities have meaningful transition options into postsecondary education that leads to academic, career and independent living training, and employment.

You can read more on NDSS postsecondary education initiatives here.

Thank you for all you do!



Ginny Sessions
Manager, Grassroots and Development Programming
National Down Syndrome Society

Congress Eyeing Tax-Free Disability Savings Accounts

by Michelle Diament from Disability Scoop:
With significant public backing and support in Congress, advocates say federal lawmakers are poised to consider a major change to the money-saving abilities of those with disabilities.
Just one hurdle remains before Congress is expected to take up the Achieving a Better Life Experience, or ABLE, Act.
The bill — which has lingered since at least 2009 — would establish special accounts to allow people with disabilities to save up to $100,000 without risking their eligibility for benefits like Social Security. What’s more, under the plan, individuals could retain Medicaid no matter how much is deposited.
But before Congress can move forward, lawmakers are waiting for the Congressional Budget Office to weigh in with an estimate of what the bill would cost the government if it’s implemented. Once that figure is released — which could happen any day now — Congress is expected to act swiftly with advocates hoping for a floor vote in early spring.
“The ABLE Act is a must-pass piece of legislation for this Congress,” said U.S. Rep. Cathy McMorris Rodgers, R-Wash., who is a member of the House leadership and a co-sponsor of the bill, in a statement to Disability Scoop.
Modeled after the popular 529 college savings plans, the ABLE Act would allow individuals with disabilities to open a special account at any financial institution to pay for education, health care, transportation, housing and other expenses. Interest earned on savings within the accounts would be tax-free.

Support for ABLE Act Continues to Grow

from PennsNews.com:
WASHINGTON, D.C. – Today, support continued to grow for the Achieving a Better Life Experience Act (ABLE Act – S. 313/H.R. 647), introduced by U.S. Senators Bob Casey (D-PA) and Richard Burr (R-NC), bringing the total number of co-sponsors in the Senate to 60 members.  Introduced in the 113^th Congress in February, this bill would provide an improved quality of life for individuals with disabilities through tax-free savings accounts.

“This is a significant step forward for the ABLE Act and for the families of children with disabilities,” Senator Casey said. “Now that this bill has 60 cosponsors, I’m urging the Senate to take action on it in the new year. The fact that only 6 bills in all of Congress have this many cosponsors is a sign of the overwhelming support for this effort to make a major difference in the lives of these families.”

“The ABLE Act is a commonsense piece of legislation that allows families of disabled children to have the same access to tax preferred savings accounts as the parents of college-bound kids,” Senator Burr said.  “I am very excited that we now have 60 Senators on board and can hopefully expect swift movement on the Senate floor to send this bill to the President.”

The legislation would amend Section 529 of the Internal Revenue Service Code to 1986 to allow use of tax-free savings accounts for individuals with disabilities. The bill, first introduced in 2006, would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, medical, and transportation. The bill would supplement, but not supplant, benefits provided through private insurance, the Medicaid program, the beneficiary’s employment, and other sources.

ABLE Act Gets Majority Support

from the Autism Policy Blog by Pitney:

The ABLE Act (HR.647 and S.313) yesterday had majority support in both chambers as the 51st senator became cosponsor (counting prime sponsor Robert Casey (D-PA)). As of this morning, it had 310 in the House (including prime sponsor Ander Crenshaw R-FL)). A number of lawmakers agreed to cosponsor when they met with advocates during last week's Autism Speaks to Washington summit. Autism Speaks provides the full list here.

The Arc explains the bill:

Many families have been searching for a way to plan for the future of a child with severe disabilities. While they are able to save for the educational needs of their other children through “529” college tuition plans, they find those plans do not fit the needs of their child with severe disabilities, since their children may now, or in adulthood, need the long term services and supports of the Medicaid program and the income assistance of the Supplemental Security Income (SSI) program. Some families have found it too expensive to establish a trust which meets the requirements of the Medicaid and SSI programs, yet they recognize that their loved ones may live for many decades beyond the ability of the parents to supplement the services they receive through Medicaid. Others want to ensure the financial security of family members who have the level of disability required for Medicaid eligibility, but for now, are managing to function without the use of those benefits. Still others want to ensure that their family member can exercise control over the funds in the account without endangering the Medicaid and SSI benefits on which they may rely. The ABLE Act (S.313 / H.R.647) would give individuals with disabilities and their families access to accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

From a Crenshaw press release:

Congressman Ander Crenshaw (R-FL), chairman of the Financial Services and General Government Appropriations Subcommittee, stated, “Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever - testament to the tireless dedication of those who believe that ALL Americans deserve equality when it comes to financial planning tools. It’s time to pass this legislation and create a brighter future for those in need. ”

Senator Robert Casey (D-PA) stated, “The ABLE Act is commonsense bipartisan legislation that will help make it easier for those families to save for their children’s future care, and we should pass it immediately. Individuals with disabilities and their families face challenges many of us can’t even begin to imagine.

The ABLE Act: Opportunity for Congress to make a difference

by Sara Hart Weir and Steve Beck from the Hill:

There is a single piece of legislation, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647), before the U.S. Congress that has earned the bipartisan support of at least 312 representatives and 51 senators.

This bill would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available, through the current 529 program, so individuals with disabilities and their families can save to cover qualified expenses such as postsecondary education, housing, transportation, workforce development, and medical expenses not covered by insurance.

Recently, Sens. Bob Casey (D-Pa.) and Richard Burr (R-N.C.) and Reps. Ander Crenshaw (R-Fla.), Chris Van Hollen (D-Md.), Cathy McMorris Rodgers (R-Wash.), and Pete Sessions (R-Texas), the ABLE Act's bipartisan, bicameral Congressional champions, teamed up to call on their Congressional colleagues to pass the ABLE Act before the end of the year.

By enacting the ABLE Act, we aren't asking Congress to create a new program or give us a hand out, we are asking Congress to give the disability community the chance to provide and save for themselves through savings tools that all other Americans have access to today.

Over 100 stakeholder organizations have endorsed the ABLE Act. The bill also earned the backing of lawmakers ideologically ranging from  Sen. Bernie Sanders (I-Vt.) to Sen. Marco Rubio (R-Fla.) in the Senate and Rep. Thomas Massie (R-Ky.) to Rep. John Lewis (D-Ga.) in the House of Representatives.

Fashion show puts spotlight on amazing children

By Kyra Phillips by HLN:

It's a star studded event. The energy is electric. The crowd always goes wild.
There are members of Congress, Senators, famous athletes and television personalities.
But nothing or no one is more beautiful than the models.
Each of them struts down that runway, wearing the fashion designer's most exquisite piece.
They wave to the crowd, flash a smile, blow a kiss, take a bow and even twirl underneath the spotlights.
These models are proud, they are confident... and they have Down syndrome.
I can't even begin to tell you what joy this gala brings me. As the emcee of the "Be Beautiful Be Yourself Fashion Show" in Washington, D.C., I am honored to say that this is the single largest annual fundraiser benefiting people with Down syndrome.
I have volunteered with Special Olympics for more than 20 years, I have co-workers and friends with children who have Down syndrome and I never realized that, according to the National Institute of Health, it is the least-funded genetic condition in the United States. The Global Down Syndrome Foundation was formed with the goal to improve the lives of people with Down syndrome through advocacy, research, medical care and education. Foundation supporters work to empower governments, educational organizations and communities around the country to affect legislative and social changes so that every person with Down syndrome has an equal chance at a fulfilling life.
As a journalist and as a parent, I need to be an advocate. If you have never been touched by a child who has Downs, let me tell you... their compassion, their love, their ability to see joy within every obstacle will not only humble you, but challenge you to be a better human being.
Check out the video above on the Global Down Syndrome Foundation and our fabulous fashion show fundraiser.
I hope you'll support GDSF and share this article to help spread the word.
As Co-Founder and Executive Director Michelle Sie Whitten said so eloquently:
"I come from a somewhat over-achieving family. I don’t know for sure, but I believe that if my daughter had been born typically, I might have put her and her younger brother on a similar track: focusing more on achievement than quality of life. I honestly believe that having a child who is differently-abled has made me an infinitely better parent – one who is clued into my child’s needs, strengths, motivators, and self-esteem. I enjoy every minute with both of my children! And now I really have patience for all children. What an amazing gift."
An amazing gift indeed.
Love,
Kyra

The Congressional Down Syndrome Caucus

Launching the CDSC

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

 Caucus Co-Chairs

Del. Elanor Holmes Norton (D-DC)      Rep. Cathy McMorris Rodgers (R-WA)

Rep.Chris Van Hollen (D-MD)      Rep. Pete Sessions (R-TX)

The Congressional Down Syndrome Caucus will:

• Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
• Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
• Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
• Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
• Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
• Identify and strike down barriers in the law for person’s with mental disabilities.
• Expand opportunities for the Down syndrome population in education, the workplace and society at large.

The goals of the Congressional Down Syndrome Caucus are:

• To raise expectations and improve outcomes in education.
• To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
• To promote and fund research that accelerates the development of effective treatments and therapies.
• Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
• To promote inclusiveness for people with Down syndrome.
• To help provide family support services and a community of care model.
• Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.

Members of the Congressional Down Syndrome Caucus from the 112th Congress.

 

Like The Congressional Down Syndrome Caucus Facebook Page.

 

John Anton Goes to Washington

Make your voice heard at the Buddy Walk® on Washington

Check out and share this great video to register for the NDSS Buddy Walk® on Washington. Advocate for people with Down syndrome in Washington, DC and make legislative priorities for people with Down syndrome a priority for members of the United States Congress too!

Advocacy needed to push initiatives for people with disabilities

by William Daroff from JTA:
In the coming weeks and months, Congress will enact sweeping reductions in federal spending, finalize the 2013 federal budget and raise the debt ceiling. The cuts that will come with these decisions are not merely numbers on a ledger; they will decimate programs that directly impact the lives of the most vulnerable among us and the ability of social service agencies to serve them.
For individuals with disabilities who are aspiring for healthy, independent lives, this is a particularly critical time. The unemployment rates we associate with the slow recovery from the Great Recession pale in comparison to the persistent lack of employment opportunities that have ever been available to the disability community. The disincentive to work inherent in our social safety net, and the inability for those relying on it to build assets, makes upward mobility even more difficult.
The growing challenge for non-profit agencies to provide home- and community-based care makes independent living for many individuals with disabilities an impossibility.
This is why dozens of advocates representing a broad range of Jewish communities, religious streams, social service providers and public policy organizations traveled to Capitol Hill on Tuesday to promote the Community First Choice (CFC) option in Medicaid and the Achieving a Better Life Experience (ABLE) Act, both of which further the goals of ensuring individuals with disabilities can lead healthy, independent lives.
During the month of February, Jewish communities across North America observe Jewish Disability Awareness Month. It is an opportunity to raise awareness of the needs, strengths, opportunities and challenges of individuals with disabilities in our communities and to ensure we are building more inclusive communities that celebrate everyone among us. It is also an opportunity for us to engage with lawmakers and express support for public policy initiatives that lead to better outcomes for the disability community.

Self Advocate Jon Anton's Message about the Buddy Walk on Washington

Dear Buddy Walk® on Washington Self-Advocates:

Greetings! My name is John Anton. I am a self-advocate from Haverhill, Massachusetts. I am currently working on Capitol Hill for Congresswoman Cathy McMorris Rodgers (R-Washington).

As fellow self-advocates, I am glad you will be participating in the 2013 Buddy Walk® on Washington on March 13-14^th because our voice counts! Members of Congress and their staff need to hear from us on the legislative issues that really matter to people with Down syndrome.

The Buddy Walk® on Washington webpage will tell you everything you need to know about the upcoming event but I want to share with you a few exciting things specifically for self-advocates that will happen at the Buddy Walk® on Washington this year:

NDSS Self-Advocates Speak Out

All self-advocate participants are invited to join the NDSS Self-Advocate Advisory Board (SAAB) for an exclusive event just for self-advocates, NDSS Self-Advocates Speak Out. This event will take place from 2:00 – 3:00 pm on March 13^th (before our advocacy training).The Board will share their expertise as seasoned self-advocates in this presentation for self-advocates by self-advocates. For more information and to RSVP, please contact NDSS Manager of Education & Programs Vanessa Quick at vquick@ndss.org.

Self-Advocate Bios

Each self-advocate should make a brief one-page bio (see template) to be left at all your congressional visits, so bring at least 5 copies with you. This is a great way to leave an impression - even on people you don’t meet in person! Bios should include a photo, contact information, a few sentences about yourself (where you work, go to school, interests), why you have come to the Buddy Walk® on Washington, how the ABLE Act will impact you and your family, and an ask to cosponsor. 

Pre-Training for Buddy Walk® on Washington

NDSS facilitates several advocacy training webinars to help prepare you for your advocacy experience, what to expect on Capitol Hill, and discuss the 2013 key legislative priorities. You can find the slides from the first webinar, Buddy Walk® on Washington 101 – Everything You Need to Know. The next webinar, Buddy Walk® on Washington 201 – Ins & Outs of the NDSS 2013 Legislative Agenda/Asks, will be held on February 26 at 3:00 PM ET. You can register for the webinar here.

You can always contact NDSS VP of Advocacy and Affiliate Relations, Sara Weir at sweir@ndss.org with any questions.

See you in Washington!

Sincerely,

John Anton

NDSS DS-Ambassador

2013 Buddy Walk on Washington

 

2013 NDSS Buddy Walk® on Washington

The NDSS Buddy Walk® on Washington is an annual two-day advocacy conference that brings the Down syndrome community together to advocate for legislative priorities that impact the lives of people with Down syndrome and their families. Advocates meet with members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome.
The 2013 Buddy Walk® on Washington will be held on March 13 & 14 in Washington, DC.

Registration

Registration for the 2013 Buddy Walk® on Washington is now open.

Hotel & Location Information

The Buddy Walk® on Washington will be held at the L’Enfant Plaza Hotel (480 L’Enfant Plaza Hotel S.W. Washington, DC 20024). To reserve your room, call 800-635-5065 or reserve online using the group name “NDSS13” to receive the special group rate by Feb. 14, 2013. If you need multiple nights at the hotel, please email NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.

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Advocacy Training - March 13, 2013

Our NDSS advocacy training session is an opportunity to learn from NDSS about our key priorities for the 2013 Buddy Walk® on Washington. You will have the opportunity to hear presentations on the key “asks”, participate in role play sessions with your state delegations, and network with affiliates and advocates across the country. We strongly encourage all attendees participate in the advocacy training session from 3:00 -6:00 PM on March 13. 

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Buddy Walk® on Washington schedule

Wednesday, March 13, L’Enfant Plaza Hotel
1:00 PM – 3:00 PM - Registration
2:00 PM - 3:00 PM Self-Advocates Speak Out - an exclusive event for all self-advocates hosted by NDSS Self-Advocate Advisory Board
3:00 PM – 6:00 PM - Buddy Walk® on Washington Advocacy Training

• NDSS Host Welcome Address
• Overview of 2012 Legislative Agenda & Asks
• Advocate Role Playing
• State Practice session
• Q&A session

7:00 PM - 9:00 PM - NDSS Awards Dinner & Celebration (Renoit/Monet Ballrooms)          
Thursday, March 14, Capitol Hill
7:30 AM - 8:00 AM Depart Hotel (via Metro) for Capitol Hill (NDSS will provide metro cards)
8:30 AM - 10:00 AM - NDSS Capitol Members of Congress Breakfast Reception
9:00 AM - 5:00 PM Capitol Hill Visits (Meetings will be scheduled for each advocate)                                           

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Scheduling Your Congressional Visits

This year, we are working with Soapbox Consulting to schedule your Congressional meetings for you. If you have any questions, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.

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Buddy Walk® on Washington & Self-Advocates

Self-advocate participants of the Buddy Walk® on Washington are invited to join the NDSS Self-Advocate Advisory Board for a panel discussion and Q&A at 2:00 pm on March 13 (before our advocacy training). The Board will share their expertise as seasoned self-advocates in this presentation for self-advocates by self-advocates.  Please note, this event is for self-advocates only. For more information, please contact NDSS Manager of Education & Programs Vanessa Quick at vquick@ndss.org.

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Advocacy Training Webinars

NDSS will facilitate two advocacy training webinars to help prepare you for your advocacy experience, what to expect on Capitol Hill, and discuss the 2013 key legislative priorities. Register for each of our webinars by clicking on the links below:

Buddy Walk® on Washington 101 – Everything You Need to Know

February 7 at 3:00 PM ET
https://www2.gotomeeting.com/register/854735786 

Buddy Walk® on Washington 201 – Ins & Outs of the NDSS 2013 Legislative Agenda/Asks

February 26 at 3:00 PM ET
https://www2.gotomeeting.com/register/810315282

Getting Around Washington

• Capitol Hill Map
• Washington DC Map
• Metro Map

For more information, please contact NDSS VP of Advocacy & Affiliate Relations Sara Weir at sweir@ndss.org.

Call-In Day Wednesday, December 19th!

Call-In Day Wednesday, December 19th!

 

from the NDSC:

The negotiations that are currently taking place between President Obama and Speaker of the House Boehner are critical to the future of individuals with Down syndrome and other disabilities. We rely on important programs, from education to supports to live in the community, that are directly affected by these negotiations. These programs are at risk.

  

The Consortium for Citizens with Disabilities, a national consortium of over 100 disability organizations, is holding a call-in day on Wednesday, December 19th. NDSC is an active member of this Consortium. Please take a few minutes and call your Senators and Congressional Representatives with the message below.

"I want to make sure you know the importance of programs such as special education, early intervention and preschool services, employment supports, health insurance, community living supports, and housing for children and adults with Down syndrome and other disabilities. Many of these programs are funded by Medicaid and Medicare, and other sources that are at risk during the "fiscal cliff" negotiations. Please make sure that funding is protected and programs remain strong in the coming deficit reduction debate.

I urge you to preserve critical funding for the life-changing programs that support families with disabilities, and ask that you respond to my message when it's received."

It is easy to find your elected representatives by visiting this website: http://www.usa.gov/Contact/Elected.shtml

Parents and self-advocates showed their strength at the NDSC's Day on the Hill in July, 2012. Let's keep that going!

Harkin: Leave Medicare, Medicaid out of fiscal-cliff talks

By Elise Viebeck from the Hill:

Senate Health Committee Chairman Tom Harkin (D-Iowa) said Thursday that Medicare and Medicaid should be off the table during talks on the fiscal cliff.

Harkin spoke alongside other liberal lawmakers at an event to highlight opposition to cutting social programs for deficit reduction.

He touted the results of the Nov. 6 election as evidence that Americans support raising taxes instead of cutting spending. 

When it comes to Social Security, Medicare and Medicaid, the American people told us to protect and strengthen these programs, not cut them," Harkin said.

"The American people want a change in the structure of who pays and making sure that we keep the programs that protect the poor, the disabled and the elderly," he told The Hill.

President Obama will meet Friday with lawmakers to open negotiations on how to avoid the "fiscal cliff," a combination of tax increases and automatic spending cuts that will hurt the U.S. economy unless lawmakers act.

In earlier talks, Obama backed roughly $100 billion in cuts to Medicaid, including a streamlined system for federal payments that would result in state governments shouldering more of the funding burden.

At Thursday's event, Sen. Bernie Sanders (I-Vt.) said he wanted to "send a very loud and very clear message to the leadership … in the White House" not to cut Social Security, Medicare or Medicaid.

Sanders added, "There are fair ways to reduce the $1 trillion federal deficit and $16 trillion national debt, but balancing the budget on the backs of the elderly, the sick, the children and the poor is not among them."
 Republicans have said they won't accept new tax revenues unless Democrats agree to reform entitlements.

Medicaid, The Frail Elderly, And Federal Budget Cuts

by Howard Gleckman from Forbes:
Medicaid is in the budget bull’s eye. But many lawmakers aiming to cut the program have no idea what it does, and how important it is to frail seniors who need help with daily living. The popular image of Medicaid: health care for a poor mother and her child. The all-too-often reality: long-term supports and services for an 85-year old widow with dementia.
With Congress and President Obama looking for both a short-term way to avoid the dreaded fiscal cliff and a long-term deficit reduction deal, Medicaid and Medicare are at the top of the hit list—in large part because they are so costly.
Let’s leave the debate over Medicare for another time. But Medicaid, frequently lumped in with Medicare and Social Security as one of those vaguely threatening “entitlements,” is another matter.
Medicaid, jointly run by the federal government and the states, does two jobs. It provides health care for those poor mothers and their kids—who represent about three-quarters of enrollees. But two-thirds of the Medicaid budget is spent on the frail elderly and younger adults with disabilities. And one-third of all Medicaid spending—about $120 billion– is for their long-term care alone.
In recent months, conservatives have taken up the cry that the U.S. has become a “Nation of Takers,” to borrow the title of a recent book by American Enterprise Institute scholar Nick Eberstadt. It became a common campaign theme of GOP presidential candidate Mitt Romney. A recent column by Washington Post columnist Bob Samuelson nicely summarizes this view. And too often Medicaid is casually tossed into the conversation.
So who are the Medicaid takers? Among the elderly, they are among the nation’s most vulnerable. They are frail, often suffer from multiple chronic diseases (such as heart failure, dementia, or diabetes), and are impoverished. Many were once middle class but, due to illness, are without financial resources in old age.
Look at the roughly 9 million people who are sick enough and poor enough to be eligible for both Medicare and Medicaid (often called the dual eligibles, or just the “duals”). Some are poor, but relatively healthy. Many others are not.
Two-thirds of the duals are aged 65 or older. According to MedPAC, the independent commission that advises Congress on Medicare, 38 percent have cognitive or mental impairments, 22 percent have multiple physical impairments, and 23 percent live in nursing homes or other institutions.
Sixty percent of those duals who live in nursing homes or other institutions have dementia or some other cognitive impairment. According to the Kaiser Family Foundation, one-quarter of elderly who are eligible for both programs need assistance with at least three activities of daily living (such as bathing, going to the bathroom, eating, or dressing). Many are, in other words, helpless.
Among the 1 million dual eligibles who are the most costly Medicaid patients, nearly half are aged 80 or older, three-quarters need help with 3 or more activities of daily living, three-quarters live in institutions, and one out of every six has Alzheimer’s.
Ninety percent are poor or near-poor. More than half have incomes of less than $10,000. And 90 percent have no other insurance. According to Kaiser, 70 percent are women and only about 20 percent are married. Some have adult children to care for them. Many others do not.
There is no doubt the U.S. has a long-run budget problem, and that we need to do a better job caring for the frail elderly who are chronically ill and need both medical care and long-term services. Maybe we can find a way to provide these people with better care and save money. Maybe we can find an alternative to Medicaid, at least for people who were once middle-class. But taking a meat axe to Medicaid in a frantic attempt to hit a politically-motivated budget target is not the way to do it.

Fiscal Cliff: What Is At Stake For Medicare And Medicaid?

from Kaiser Health News:
Jackie Judd talks to KHN's Mary Agnes Carey about the budget negotiation scenarios for Medicare, where the "doc fix" fits into the budget picture, and whether Medicaid cuts are possible.
>>Listen to the audio or read a transcript below:
JACKIE JUDD:  Good day, this is Health on the Hill. I’m Jackie Judd. A year ago this month, negotiations on Capitol Hill to reduce the federal deficit collapsed. A year later, have the political dynamics shifted enough so that there is an opportunity for a deal? And if so, how might that affect Medicare and Medicaid? Here to sort through that question is Mary Agnes Carey, senior correspondent for Kaiser Health News.
Mary Agnes, you’ve spent a lot of time this week listening to what people were saying on Capitol Hill. Are you hearing anything different?  Is the tone different? Could there be a deal?
MARY AGNES CAREY: Everyone seems to be talking about a “balanced approach.” We hear this from the president. We hear it from Democrats. We hear it from Republicans. The president and Democrats are saying to Republicans, “If you move on taxes, if you ask some high-income individuals to pay more on taxes, we’ll move on entitlements, on Medicare and Medicaid.”  People seem very, very open to this idea of avoiding the fiscal cliff, of avoiding these automatic spending cuts that are set to kick in in January.  But the thing we have to remember from watching Capitol Hill for a long time is that this is where folks always are at the beginning of a negotiation.

DSR Podcast Episode #14: Call Your Members of Congress!! (with Susan Goodman)

DSR Podcast Episode #14: Call Your Members of Congress!! (with Susan Goodman)

by papajason

As parents of children with special needs, we tend to get consumed with day-to-day activities and advocating for our children in their everyday life.  Well, thankfully, we also have some wonderful friends in Washington, DC helping to shape national public policy with the best interest of our families in mind.  Today, we are pleased to welcome one of those amazing advocates to our show.  Susan Goodman is the Director of Government Affairs for the NDSC and she helps us break down some of the important policies on the table and how they affect our families.

 

Top: NDSC advocates on the Hill this Summer.  Bottom: Susan and her family

We discuss education and IDEA, the ABLE Act, possible cuts to Medicaid and many other hot topics.  Sign up to receive legislative alerts via email or follow Susan on Twitter or Facebook.  When you receive your call to action, follow the instructions – it is easy and really works!  Constituent feedback is the best possible way to reach your legislators.  Be sure to add a paragraph or two to personalize your communications.   Invite your local politicians to your Buddy Walk or DSA meetings to put faces and personalities to the numbers and policies.

Rick’s great story is a letter from a classmate of Mary Margaret Burns, the recently crowned homecoming queen of West Feliciana High School who happens to have Down syndrome.  We hear a lot of stories about individuals with DS receiving these honors – and each one is truly awesome.  It is just as great to hear the kind words of their friends and classmates describing the impact they have on their lives.  Inclusion in schools is working, and not just for the kids with special needs!

Download Down Syndrome Radio, Episode #14.
Better yet…subscribe, rate us and leave a comment on iTunes!

Medicaid in Post-Election Discussions of Deficit Reductions

by David Heymsfeld, AAPD Policy Advisor:
With the election over, and Congress scheduled to return next week, Washington’s attention will quickly shift to proposals to reduce the federal deficit.
It has been widely reported that during the last few months there have been extensive behind the scenes discussions, particularly by Senators, of “grand bargains” to reduce spending and increase revenues to make major reductions in the deficit.  Now these discussions will move to the public arena.   They will be dominated by a sense of urgency created by the so-called fiscal cliff across the board spending cuts and tax increases which will occur on January 1, unless Congress passes legislation to undo them.
Reports of the behind-the scenes discussions indicate that they include considering proposals to make significant reductions in the federal Medicaid program. This is an issue of great concern to people with disabilities; 8 million of whom rely on Medicaid for health care and long term supports which is critical to their ability to live healthy productive lives as independent members of their communities.
AAPD and other advocates have made it clear that we are willing to work with Congress and the Administration to develop proposals which reduce the costs of Medicaid, by reforms that will make the program more efficient without reducing the services provided.  We will oppose proposals that only reduce funding and lead to cuts in the number of beneficiaries or the services they receive.
Two general approaches for reducing annual spending for Medicaid have gained significant support.
The first, incorporated in the budget passed by the House earlier this year is known as the block grant approach.  It specifically sets funding levels for Medicaid for the next ten years.  The ten-year budget would reduce Medicaid spending by $800 billion compared to the current program.
The second approach, one that reportedly has been seriously considered in the recent behind the scenes discussions, is a “per capita” approach.  It would limit funding by establishing an allowable cost for each beneficiary under the program. This would permit increased funding if more persons were added to the program.
In evaluating any specific proposals to reduce funding with these approaches, it is important to bear in mind that there are two separate issues; how much is funding reduced, and what problems are created by the method used to set the caps.