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Deficit Reduction: What Disability Advocates Need to Know

/in /by The Arc

The Arc succeeded in helping to protect Medicaid in last year’s deficit reduction law, the Budget Control Act. Now there is mounting pressure to find an alternative to cuts mandated by the Budget Control Act or to find additional cuts in the federal budget to reduce the deficit further. We must renew our efforts to protect the four major programs that impact people with intellectual and developmental disabilities (IDD) – Medicaid, Medicare, Social Security, and Supplemental Security Income (SSI), in addition to the many discretionary programs that people with disabilities rely on to be a part of their community.

Disability advocates must remain engaged throughout the coming months to minimize cuts to these programs and protect eligibility and services that are vital to the lives of people with disabilities. Advocates must urge Congress to provide sufficient revenues to fund critical services and supports needed by individuals with IDD to live and work in the community.

The bottom line is that our work is far from over, and Medicaid continues to be at risk. This analysis aims to educate advocates about the current fiscal situation and its potential impact on people with IDD.

This analysis was previously shared with those are signed up for our Action List. Want to get involved with The Arc’s legislative advocacy? Sign up here.

If you require a Word version of this document, please contact Kristen McKiernan at McKiernan@thearc.org.

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Celebrating Supplemental Security Income

/in /by TJ Sutcliffe

This week, The Arc celebrates the40th anniversary of Supplemental Security Income (SSI), our nation’s safety net for low-income seniors and people with disabilities.

Forty years ago, many people with significant disabilities – like intellectual and developmental disabilities (IDD) – who were unable to support themselves with work or savings were forced to rely on a patchwork of state income support programs. Each state had its own rules for who could get benefits, for how long, and for how much – and not every state offered aid.

In 1972 SSI replaced this fragmented, woefully inadequate system with a national program offering a minimum monthly income for low-income people with significant disabilities and the elderly. On signing SSI into law, President Richard M. Nixon noted that “This legislation once again provides dramatic and heart-warming evidence that America is the country that cares-and translates that humanitarian care into a better life for those who need, and deserve, the support of their fellow citizens.”

In 2012, SSI provides monthly cash benefits to over 8 million children and adults, including many with IDD.

The Arc knows that SSI is a lifeline for people with IDD – and that it’s so much more than dollars and cents. SSI helps many adults with IDD secure housing to help them live in the community and pay for essentials like clothing, transportation, and utilities. It helps parents of children with IDD meet the costs of raising a child with a significant disability, and replaces lost income when a parent must take time off work to help care for a child. Without SSI, many people with IDD would face terrible consequences including potential homelessness or institutionalization.

This week we celebrate SSI’s 40th anniversary, and call on Congress to keep SSI strong for another 40 years. The Arc is fighting to keep SSI from being cut as part of Congressional deficit reduction efforts, and has many ideas for strengthening SSI, including ways to make SSI work better for beneficiaries who wish to work.

Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that SSI and other vital programs are there for people with IDD.

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Social Security Administration Announces 1.7 Percent Cost-of-Living Adjustment for 2013

/in /by TJ Sutcliffe

Today the Social Security Administration (SSA) announced a 1.7 percent cost-of-living increase for 2013. This modest increase will help preserve the buying power of Social Security benefits for nearly 62 million Americans, including many people with intellectual and developmental disabilities who receive benefits under the Social Security retirement, survivors’, and disability systems.

According to SSA, the average monthly retirement benefit will increase by $21, from $1,240 in 2012 to $1,261 in 2013. The average monthly benefit for a “disabled worker” will increase by $19, from $1,113 in 2012 to $1,132 in 2013.

Higher Medicare premiums will likely offset some of this increase. Changes in Medicare premiums will be announced later this year at Medicare.gov.

The cost-of-living increase will affect many parts of the Social Security system, including important thresholds under the Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs, including:

  • Substantial Gainful Activity (SGA) level – The SGA for SSDI and SSI will increase from $1,010 per month to $1,040 per month for non-blind beneficiaries, and from $1,690 per month to $1,740 per month for blind beneficiaries.
  • Trial Work Period (TWP) – The TWP for SSDI will increase from $720 per month to $750 per month.
  • SSI Federal Payment Standard – The SSI federal payment standard will increase for an individual from $698 per month to $710 per month, and for a couple from $1,048 per month to $1,066 per month.
  • SSI Student Exclusion – The SSI student exclusion monthly limit will increase from $1,700 to $1,730, and the SSI student exclusion annual limit will increase from $6,840 to $6,960.

Annual cost-of-living adjustments are a vital part of ensuring that Social Security beneficiaries do not see their buying power eroded by inflation. SSDI and SSI benefits are modest, averaging only about $1,111 per month for SSDI beneficiaries in the “disabled worker” category and $520 per month for SSI beneficiaries.

The Arc strongly supports ensuring adequate benefit levels. We recently joined 95 other organizations to send a letter to Congressional leaders to oppose a proposal to reduce these much-needed annual cost-of living increases. Subscribe to The Arc’s Capitol Insider for updates to learn how you can help make sure that Social Security and other vital programs are there for people with IDD.

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Register to Vote: The First Step to Empowering Yourself

/in /by The Arc

With elections around the corner we are all being inundated with advertisements from both ends of the political spectrum. All the focus seems to be on the candidates when the most important people in any election are the voters. That’s right – you are the most important part of this election.

Too often we forget that voting is not only a right but a way to empower ourselves. Our vote represents our beliefs and our hopes for our nation. It is also an opportunity for us to tell those leading our country what we expect them to be doing. It isn’t just about what is happening in Washington, DC, the right to vote can influence what happens in your backyard. Each time you vote you empower yourself, and you make sure that your opinion matters.

Take the first step to empowering yourself and register to vote today!

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The Federal Government Needs Your Input on IDD and Alzheimer’s Disease

/in /by Maureen Fitzgerald

The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (IDD) who also have Alzheimer’s disease or other forms of dementia. AIDD wants to learn more about addressing the needs of specific populations disproportionally affected by Alzheimer’s disease, like people with Down syndrome.

If you are a family member of a person with IDD who also has Alzheimer’s or dementia, AIDD is specifically looking for your experience with the following topics:

  • Accurate and timely diagnosis;
  • Access to care;
  • Education on Alzheimer’s disease for practitioners who do not normally specialize in care for people with Alzheimer’s disease; and
  • Special considerations for these populations.

Responses should go directly to Dr. Mette Pedersen at mette.pedersen@acf.hhs.gov and Matthew Janicki at the University of Illinois at Chicago, mjanicki@uic.edu by September 25, 2012.

We at The Arc appreciate your willingness to share your thoughts with AIDD. The more they hear from people directly involved with the care of people with Alzheimer’s and IDD, the better chance we have at making progress in addressing the needs of people with IDD.

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Top Reasons Why The Arc Supports the Affordable Care Act

/in /by The Arc

Health Insurance Reforms in the Affordable Care Act (ACA)

  • Eliminates pre-existing condition exclusions
  • Bans annual and lifetime limits
  • Ends the practice of rescissions (insurance coverage is cancelled when a person develops a serious health condition)
  • Improves appeals process including independent reviews
  • Requires that 80% of health insurance premium dollars are paying for health care
  • Enhances state capacity to regulate unfair increases in insurance rates
  • Prohibits considering health status in calculating premiums (2014)
  • Requires guaranteed issue and renewals (2014)
  • Prohibits discrimination based on health status (2014)

The ACA Expanding Access to Coverage

  • Establishes temporary high risk pools to cover those who are currently uninsured (until 2014)
  • Allows coverage for dependents until age 26
  • Creates health insurance Exchanges for individuals and small employers to purchase insurance (2014)
  • Provides significant subsidies to assist low income individuals to purchase coverage in the Exchanges and provides tax credits to help small employers
  • Includes coverage of dental and vision care for children in the Exchanges
  • Includes mental health services, rehabilitative and habilitative services and devices, and other critical disability services in the health plans sold in the Exchanges

The ACA Expands Medicaid

  • Expands Medicaid eligibility to 138% of the federal poverty level
    • New method of income disregards
    • No asset test
  • 16 million new beneficiaries by 2019
  • Federal government pays 100% till 2016 (phase down to 90% in 2020)

The ACA and Long Term Services and Supports

  • Establishes the Community First Choice Option for states to cover comprehensive community attendant services under the state’s optional service plan
  • Improves existing Section 1915(i) option for home and community based services
  • Creates a new state balancing incentives to reduce institutional bias of Medicaid
  • Extends “Money Follows the Person” Demonstration
  • Authorizes the CLASS program

Other Medicaid and Medicare Improvements

  • Gives states the option to provide health homes for Medicaid enrollees with chronic conditions
  • Allows a free annual Medicare well visit with assessments and individualized prevention plan
  • Eliminates Medicare Part D (drug coverage) co-pays for dual eligibles receiving waiver services
  • Improves Medicare Part D access to key anti-seizure, anti-anxiety and anti-spasm medications

Selected Prevention, Provider Training, Data Collection and Accessibility Issues Addressed by the ACA

  • Eliminates co-pays for critical prevention services
  • Creates the Prevention and Public Health Fund (PPHF) to provide new funding for transformational investments in promoting wellness, preventing disease, and other public health priorities
  • Increases opportunities for training of health care providers (including dentists) on the needs of persons with developmental and other disabilities
  • Authorizes new training programs for direct support workers who provide long term services and supports
  • Improves data collection on where people with disabilities access health services and where accessible facilities can be found
  • Adds disability as a category to measure health disparities and in health care quality reporting surveys
  • Requires the establishment of criteria for accessible medical diagnostic equipment

Key Disability Data Regarding Access to Health Care

According to the Centers on Medicare and Medicaid Services (CMS):

  • 15% of the uninsured have at least one disability (HHS/ASPE Analysis of 2010 CPS self-reported data)
  • 12% of uninsured adults with incomes below 138% of the federal poverty level report limited ability to work or unable to work (Urban Institute Analysis of 2006 MEPS data)

Altman, B. Bernstein A. Disability and health in the United States, 2001-2005. Hyattsville, MD National Center for Health Statistics 2008

  • Adults 18-64 with cognitive difficulty, 13.6 % had no insurance, 32.1% private insurance, 41.0% Medicaid, and 27.0% Medicare.
  • Adults 18-64 with disabilities are less likely than those without disabilities to have private health insurance coverage – 46.3% for those with complex activity limitation and 61.3% with basic actions difficulty (61.3%) compared to 75.2% with no disability.

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007. Rockville, MD: U.S. Department of Health and Human Services 2011.

  • Children with special health care needs – 29. 4% had inadequate coverage compared to 22.1% of children without special health care needs. Inadequate insurance is a far more prevalent problem than gaps in insurance or lack of insurance among children with special health care needs. (29.4% inadequate insurance whereas 12.3% had gaps in insurance or no insurance).
  • Children with special health care needs have unmet needs for specialty medical care—27% had problems accessing specialists and of the children with emotional, behavioral or developmental conditions, 48.4% did not receive mental health services.

Children with special health care needs are defined in the National Survey of Children’s Health as those who have one or more chronic physical, developmental, behavioral or emotional conditions for which they require an above routine type or amount of health and related services. 14-19% of children in the U.S. meet this need.

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April Is Fair Housing Month

/in /by TJ Sutcliffe

This April we celebrate the 44th anniversary of the Fair Housing Act, a powerful law that fights housing discrimination and opens doors for people with disabilities across the U.S. This year’s theme is “Live Free: Creating Equal Opportunity in Every Community.”

Fair Housing Month events are being held all across the country.

What Is The Fair Housing Act?

The Fair Housing Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex (gender), familial status, and disability. Under the Fair Housing Act, it is unlawful to discriminate in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that person, a person associated with the buyer or renter, or a person who plans to live in the residence. For example:

  • The Fair Housing Act requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space and common spaces (landlords are not required to pay for the changes).
  • The Fair Housing Act requires landlords to make reasonable exceptions in their policies and operations to afford people with disabilities the opportunity to use and enjoy their housing. A landlord with a “no pets” policy may be required to grant an exception for a tenant who uses a service animal.
  • The Fair Housing Act prohibits lenders from imposing different application or qualification criteria on people with disabilities, or inquiring about the nature or severity of a disability (except in limited circumstances). The U.S. Department of Housing and Urban Development (HUD) recently charged Bank of America with discrimination against people with disabilities.
  • The Fair Housing Act requires that new multifamily housing with four or more units be designed and built to allow access for people with disabilities.

It’s been over 4 decades since President Lyndon B. Johnson signed the Fair Housing Act into law. There’s much to celebrate, but also much work to do. People with disabilities increasingly want to live in the community in a home that they rent or own. Unfortunately, far too many find that discrimination limits their options: disability-based discrimination is the top reason for Fair Housing Act complaints submitted to HUD.

What Can You Do?

If you suspect discrimination, you can file a complaint with HUD online or by calling 800-669-9777, or TTY 800-927-9275. You may also file a lawsuit in court. Contact a local fair housing agency for guidance and help filing a complaint.

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Possible Medicaid Cuts and What You Can Do

/in /by Ralph Scott

Right now, Congress and the President are debating how to cut federal spending to bring down the deficit. Unfortunately – and almost unbelievably – people with intellectual and developmental disabilities are prime among those who may bear the brunt of many of the proposed funding cuts and policy changes.

There are many proposals being discussed in Washington to balance the budget. What they have in common is that Medicaid spending would need to be dramatically cut in a short period of time. They include:

  • Block Granting Medicaid: This policy, which was passed in the House’s 2012 Budget Resolution, would give states a fixed amount of money for health care and long term services and would likely remove requirements for how the states spend the money. Funding and services could evaporate, as financially strapped states took aim at programs without powerful constituencies and tightened eligibility for other programs.
  • Spending Caps: These would set an overall limit on federal spending that is well below current levels and would likely result in a Medicaid block grant (see above). Both houses of Congress may vote this week on a measure that could ultimately force such drastic cuts to occur.

Cuts to Medicaid are on the table in all of these proposals, directly or indirectly, and that alone requires us to act! Time is short.

What would these cuts mean for people with disabilities? There would be no guarantee of services. People with disabilities could be denied:

  • Health insurance coverage
  • Home and community based services

What can we do?

We expect Congress to vote on legislation to cut the deficit before the end of July, and we don’t know yet what that will mean for Medicaid. Now is the time to tell your Senators and Representative what Medicaid means to you and your loved ones and friends with IDD, and tell them “Don’t Cut Our Lifeline!”

Please call your Senators and Representatives as soon as possible. Enter your zip code to get their phone numbers.

What should I say?

  • The budget cannot be balanced on the backs of people with intellectual and developmental disabilities.
  • Deep cuts in Medicaid cannot be tolerated – including block grants and spending caps that impact Medicaid.
  • Medicaid and programs that serve low-income people must be exempt from deficit reduction plans.
  • Share your story! There is nothing more powerful than sharing your personal experience, so please tell your elected official about your support service needs.
  • Don’t Cut Our Lifeline!
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Don’t Cut Clare’s Lifeline

/in /by The Arc

On Wednesday, July 6th, the O’Brien family from Waycross, Georgia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Deirdre O’Brien has two children, including her 13-year-old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

“Without Medicaid, our family’s life would revolve around illness, not health and happiness. Clare gets the care she needs from her family and from the staff paid for by Medicaid funds, and I can continue to work. Medicaid is a lifeline for us, and the White House needs to hear our story and the stories of the thousands of families like ours in Georgia,” said Deirdre O’Brien.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.

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Don’t Cut Graysen’s Lifeline

/in /by The Arc

On Wednesday, July 6th, the Keaton family from Milton, West Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome (22q11.2 deletion syndrome) is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects – Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

“Drastic cuts in Medicaid would force me to quit my job to take care of Graysen, as I couldn’t afford the nursing care without it. Medicaid is our lifeline, and I’m going to urge the White House to keep the nation’s commitment to provide for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home,” said Amanda Keaton.

Take Action

Find out more on the potential cuts to Medicaid and The Arc’s Don’t Cut Our Lifeline campain. Take action and tell your elected officials “Don’t Cut Our Lifeline!”

About the Video

This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.