April is Fair Housing Month!

Live Free

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 over the nation.

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.

A Lifeline for Vernon

Don't Cut Our Lifeline Logo

We constantly talk about how Medicaid is a lifeline for individuals with intellectual and developmental disabilities (I/DD), but sometimes we need a reminder of what that actually means.

Medicaid provides individuals with significant disabilities who generally don’t have access to employer-based or other private coverage access to health insurance and programs that help them live independently in the community.  For many families a Medicaid waiver is the difference between their loved one living in an institution or remaining at home, surrounded by friends and family.

Please take a moment to read about Colena Jones and her son Vernon.

To learn more about how Medicaid is a lifeline for Vernon and so many others, visit our Don’t Cut Our Lifeline page on our website.

Possible Medicaid Cuts and What You Can Do

Don't Cut Our Lifeline LogoRight 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 I/DD, 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!

Don’t Cut Clare’s Lifeline

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.

Don’t Cut Graysen’s Lifeline

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.

Don’t Cut Bailey’s Lifeline

On Wednesday, July 6th, the Brandt family from Springfield, 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 is 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.

Carrin and Mitchell Brandt are parents of 10-year-old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-term support needs, such as residential and day support.

“If we lost Medicaid, it would jeopardize my husband’s small business, and one of us would have to give up our jobs. Bailey’s life and health could dramatically change, as she wouldn’t be able to participate in our community and continue to grow to be as independent as possible. We don’t want to ever see our daughter living in an institution, but without Medicaid, we don’t know what our future holds,” said Carrin Brandt.

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.

FINDS Survey Facts to Support “Don’t Cut Our Lifeline” Campaign

In 2010 The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (I/DD) and their family caregivers. Much of the data supports The Arc’s Don’t Cut Our Lifeline campaign. The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. More than 5,287 family respondents participated in the survey; of these, three-quarters shared their home with a person with ID/DD. Overall, 95 percent of respondents were parents, siblings, children, grandparents or other relatives of a person with ID/DD.

Family caregivers in 2010 reported substantial ongoing challenges to providing lifelong supports to family members with intellectual or developmental disabilities. People with ID/DD and their families face very real challenges to achieving their aspirations for the future, and decreasing benefits from Medicaid will only continue to hamper such aspirations and millions of lives.

Supports provided by Family Caregivers

  • Most family caregivers (58%) provide more than 40 hours of unpaid care per week and 40% provide more than 80 hours of unpaid care per week. This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
  • Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%).
  • They report paying for more services out of pocket (47%) and providing more support than they used to (41%).
  • Fifty-two percent (52%) of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program;
  • People with severe ID/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild ID/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver.

Challenges

  • Family caregivers report that 25% of the people with ID/DD had no source of
  • income. Only 15% of the people reported being employed.
  • Overall, 62% report experiencing decreases in services and 32% were waiting
  • for government funded services, most for more than 5 years.
  • 20% of family caregivers reported that someone in the family had to quit their job to support the person with ID/DD.
  • More than 40% of family caregivers reported the person with ID/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%).
  • 43% report that schools have cut back on services such as physical, occupational or speech therapies;
  • Nearly two-thirds of all family caregivers worry that the person they care for might have to go somewhere they don’t want to live.

Find Medicaid Data State by State

Having information that is specific to your state and/or Congressional district can be very helpful in educating and persuading your Members of Congress. We have identified a few such credible sources of Medicaid data:

State Medicaid Fact Sheets

The Kaiser Family Foundation has created a web site that allows you to create fact sheets comparing your state to others and the nation as a whole. Each fact sheets provides the state’s distribution by insurance status, Medicaid enrollment and spending by group (including people with disabilities), detailed demographic profiles, and more.

State Profiles in Medicaid Spending on Intellectual and Developmental Disabilities Services

The Coleman Institute on Developmental Disabilities at the University of Colorado publishes information on revenue, spending, and programmatic trends for intellectual/developmental disabilities (I/DD) services in the 50 states, the District of Columbia, and the United States as a whole.

Medicaid State Spending and Your State’s Economy

Families USA has created an interactive website that allow you to enter an amount of Medicaid spending cuts in your state. It then calculates the amount of money lost to the state in business activity, jobs, and salary and wages.

District by District Impact of Medicaid Cuts

Rep. Henry A. Waxman, Ranking Member of the House of Representatives’ Energy and Commerce Committee, and Rep. Frank Pallone, Jr., Ranking Member of the Health Subcommittee, have released new analyses detailing the impact of the Republican Medicare and Medicaid proposals on each Congressional district.

Medicaid Statistics

The Medicaid and Children’s Health Insurance (CHIP) Payment Advisory Committee, known as MACPAC, provides state-specific information about program enrollment, spending, eligibility levels, optional Medicaid benefits covered, and the federal medical assistance percentage (FMAP), as well as an overview of cost-sharing permitted under Medicaid and the dollar amounts of common federal poverty levels (FPLs) used to determine eligibility for Medicaid and CHIP. It also provides information that places these programs in the broader context of state budgets and national health expenditures. View the report.

Different Deficit Reduction Efforts, Same Result for Medicaid?

All Roads in Congress May Lead to Block Granting Medicaid

Congress is considering a number of different mechanisms that may result in cuts so large that the only option would be to block grant Medicaid. Under a block grant, Congress would give states a reduced, fixed amount of money and eliminate many of the requirements (such as who to cover and what services to provide). Block granting is the worst option for people with intellectual and developmental disabilities (I/DD) as it would fundamentally change the structure of the program, not just cut funding for it. The individual entitlement to health care and long term services and supports would be lost and the states’ entitlement to reimbursement for actual costs would be lost. This is why it is so important to hold Members of Congress accountable for their positions on each of the mechanisms described below.

What are Spending Caps?

One approach to deficit reduction that is being seriously considered is to impose spending caps or limits. These caps limit government spending, usually limiting it to a certain percentage of Gross Domestic Product (GDP). There is one proposal that would limit federal spending to 20.6% of GDP (spending is currently 24% of GDP). This figure is the average amount of federal spending compared to all goods and services produced by the country (or GDP) in the last 40 years (before spending on aging baby boomers, national security, and interest on the debt was significant). Congress is currently considering three types of caps:

  • A global spending cap (for all federal spending);
  • An entitlement spending cap (for Medicare, Medicaid, and Social Security spending); and
  • A global health spending cap (for Medicaid, Medicare, and Affordable Care Act spending).

What happens if federal spending exceeds the spending caps?

There would be an enforcement mechanism of automatic, across‐the‐board spending cuts (called “sequestration”) if the spending limits or targets were expected to be missed. Low income programs, such as Medicaid and Social Security, would not be exempted. To bring federal spending back in line with the proposed spending caps or targets, Congress would be forced to make drastic cuts in entitlement programs. Those cuts would most likely have to include block grants for the Medicaid program.

What Legislation is Congress considering that might include spending caps?

There a currently two main efforts in Congress that are expected to involve spending caps. The first, a measure to increase the debt ceiling, is by far the most serious threat, as the U.S. is close to reaching a point of default on its financial obligations. The second, a balanced budget amendment, may or may not advance.

  1. Raising the Debt Ceiling. The U.S. debt reached the limit of $14.3 trillion allowed by law in mid‐May. However, the Treasury Secretary is able to manage accounts without defaulting until about August 2. If federal borrowing authority is not increased by August 2, the U.S. will begin defaulting on its debt, triggering a catastrophic global financial crisis. Some Members of Congress have stated that they will vote to raise the debt ceiling ONLY IF major cuts in federal spending are included. While no specific programs and amounts have yet been made public, Medicaid is widely expected to be a major target.
  2. Balanced Budget Amendment. Unlike the constitutions of most states, the U.S. Constitution does not actually require the Congress to pass a balanced budget. Some Members of Congress are looking to add a balanced budget amendment to ensure that the federal government does not spend more than it takes in, including no borrowing authority. If this were to happen, most federal spending would be radically reduced, including Medicaid.

Questions and Answers on Potential Medicaid Cuts

Q. What is happening in Washington?

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

  • Block Granting Medicaid, which would give states a fixed amount of money for health care and long term services and would likely remove requirements (such as eligibility and service minimums and quality measures) for how the states spend the money.
  • Spending Caps, with automatic enforcement, would set a limit on federal spending that is well below current spending and would likely result in a Medicaid block grant. Automatic enforcement mechanisms mean that, if a spending target is not met, cuts are made automatically without the need for further Congressional action.

In addition, Vice President Biden is leading a small group of six Members of Congress who are trying to find a way to cut the deficit. This group is working behind the scenes, and very little information about their negotiations is being made public. They are expected to reach an agreement allowing Congress to raise the debt ceiling by August 2.

What we do know is that cuts to Medicaid are on the table in all of these proposals, and that harsh fact alone requires us to act! Time is short.

Q. What happens if any of these proposals become law?

A. The cuts under any of the proposals for spending caps and automatic enforcement would be so drastic that a block grant would be the result for the Medicaid program (even if Congress does not immediately consider a straightforward proposal to block grant the program itself).

Q. What is the problem with block granting Medicaid?

A. One major problem is that the costs do not go away, but would be shifted to already cash-strapped states. If states do not make up for the federal cuts (the federal government pays 50 percent or more of the costs of every state’s Medicaid program), the costs would shift again, to individuals and their families, to health care providers, to other federal programs or to local governments.

  • There would be no more guarantees of health care services and waiting lists would grow even longer.
  • The block grant would likely have few rules and states would be free to change eligibility, cut services, and manage their programs with very little federal oversight.
  • We believe that block grants would force bad choices and cause real conflict as groups with diverse needs compete for scarce dollars.

Q. What “bad choices” might states make?

A. Since the services to people with disabilities and the elderly are significantly more costly than health care coverage for children, states could decide to serve fewer seniors and people with disabilities and focus scarce health care dollars on children. Here are some possible choices states might be forced to make:

  • Loss of home and community-based services (HCBS) and supports. Nearly 600,000 people with intellectual and/or developmental disabilities (I/DD) receive long term services paid for by Medicaid, and most receive them at home. States could decide to stop providing these services or limit the number of people who could get them, increasing waiting lists.
  • Move people back to institutions. With fewer requirements, people with I/DD may be forced back into institutions rather than community living. Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past.
  • Tightening of eligibility for services. To be eligible for Medicaid, people have to fall under certain income levels. States could restrict health care services to only the very, very poor.
  • More out of pocket costs for individuals and families. In order to get health care, people might have to pay more out of their own pockets. Since people using Medicaid have limited income resources to start with, requiring them to pay for their medical care or long term services and supports could be a significant barrier to care.
  • Reduction or elimination of critical services. If funds become scarcer, states may decide to reduce or stop providing basic services, such as personal care, prescription drugs, rehabilitative services, or home and community based waiver programs.
  • Less availability of doctors and providers for care. It is already very difficult for people using Medicaid to find doctors and other health care providers willing to accept the low payment rates, particularly specialists. If states cut the amount they pay doctors and other providers, those professionals may quit serving people under Medicaid, making access to care even more difficult to secure.