Think Before You Drink

People Magazine Cover for July 11, 2011The Arc has a strong history and deep roots in the prevention of intellectual and developmental disabilities (I/DD), especially when it comes to Fetal Alcohol Spectrum Disorder (or FASD), so I was thrilled to see my friend and colleague’s son in this week’s issue of PEOPLE Magazine (Check out the section called “Heroes Among Us”). Dillon Ohlemiller is 18 years old and the adopted son of Melinda Ohlemiller, a staunch advocate for people with FASD who worked for St. Louis Arc for 17 years. She knows first-hand the ins and outs of raising a child with an FASD, and the importance of early detection and providing intervention. That’s why The Arc called on her when we secured funding from the Centers for Disease Control and Prevention to write a curriculum educating others about the secondary disabilities of FASD and how to prevent them. Melinda and I worked together on this project back in the early 2000’s and today are both members of SAMHSA’s (Substance Abuse and Mental Health Services Administration) Expert panel on FASD.

Dillon is a shining example of how early supports and services can make the defining difference in the life of someone with an FASD. He has received support from the St. Louis Arc since he was 8 months old (and is currently in their summer program). At that time, The Arc had a collaborative arrangement with Our Little Haven (the agency featured in the PEOPLE article) to provide intervention and therapy services during Dillon’s early years, and the family also received respite and summer services throughout his childhood and adolescence.

With all The Arc and many other organizations, like SAMHSA and CDC have done in the area of education, some people still don’t realize that FASD is 100 percent preventable. Abstaining from alcohol during pregnancy is the surefire way to prevent a child from having an FASD. To learn more see our fact sheet available on www.thearc.org. Thanks to families like The Ohlemiller’s who openly share their own story, The Arc’s “Think Before You Drink” message is finally getting the attention it deserves!

The Arc Urges White House Senior Advisors to Continue to Support Medicaid

It was an emotional morning as the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia shared their personal stories with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President. What an important opportunity for The Arc to touch the hearts and minds of some of the most powerful people in government yesterday, and to show the faces of Medicaid, a program that is a critical lifeline for families with loved ones with intellectual and developmental disabilities (I/DD). The Arc appreciates the support the Administration has shown for Medicaid and other programs vital to people with I/DD and urges the Administration to continue to champion these programs during the deficit negotiations.

The concern that Medicaid – which millions of people with I/DD rely on for health care and assistance with living in the community – is on the chopping block led us to create the “Don’t Cut Our Lifeline” campaign. In April, the House of Representatives passed a budget that would have disastrous consequences for members of The Arc, and we’ve been asking you to take action and contact your legislators to let them know how important Medicaid is to you and your family. The House plan included deep cuts to Medicaid, changed it into a block grant, and seriously harmed other vital programs. The Arc believes that the budget should not be balanced on the backs of low income people and those with disabilities, and Congress must consider raising revenue and ensuring that wealthy Americans and corporations pay their fair share.

The Arc appreciated the opportunity to meet with these high-level Obama Administration officials and for these families to share their story about how Medicaid has been critical to their daughter or son with I/DD and their entire family. Listening closely to the families’ presentations, the officials thanked them for providing real life examples of the enormous challenges they face on a daily basis, underscoring the importance of the critical public policy decisions that are being debated in our nation’s capitol. The tension in the voices of family members made clear that the budget debate isn’t about numbers, it is about people’s lives.

Without Medicaid, the lives of the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia would be dramatically different. Some of these parents would have to quit their jobs, some would be forced to choose between keeping their loved one at home or moving them into an institution. Some would be forced into bankruptcy and potentially lose their home simply to provide for the health needs of their loved one. This is unacceptable to The Arc, and the White House staff we met with were visibly moved by each of these families.

We know there are millions more families like the Keatons, O’Briens, Rodriquezes, and Brandts across the country. There is still time to make your voices heard too – join our “Don’t Cut Our Lifeline” campaign!

About the Keatons of Milton, West Virginia

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge 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.

About the O’Briens of Waycross, Georgia

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.

About the Rodriguezes of Tomball, Texas

Natalie and Ruben are parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia

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.

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.

Families of The Arc Meet with White House on Medicaid Funding as Budget Deal Nears

WASHINGTON, DC – Today, families from West Virginia, Texas, Georgia, and Virginia joined The Arc at a meeting with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President to discuss the impact on people with intellectual and developmental disabilities (I/DD) if deep Medicaid cuts are included in a budget deal. As President Obama continues to engage in deficit reduction talks, The Arc, the nation’s largest and oldest human rights organization for people with I/DD, and its members are calling on Congress and the White House to keep Medicaid and programs that support those with I/DD intact.

Medicaid provides a critical lifeline for people with I/DD. It provides assistance with living in the community, respite services, assistance with daily living such as help getting dressed, taking medication, preparing meals, managing money, and getting in and out of bed. Nationwide, state and federal Medicaid together provide over 75% of the funding for these services for people with I/DD. Medicaid is also the primary source of health insurance for people with I/DD and provides needed health care services such as prescription drugs, dental, physical therapy, speech therapy, prosthetic devices, wheelchairs and other health care services for eligible people. Private insurance is often unavailable or unaffordable for people with I/DD due to discrimination in health insurance, high unemployment, and other factors.

“The Arc had the opportunity to touch the hearts and minds of some of the most powerful people in government today, and our message was clear – don’t cut the lifeline for these families. Medicaid is crucial to the health, well-­being, and future of these families, and without it, they would be forced to quit their jobs or sacrifice much of the progress their children have made with support from Medicaid,” said Peter Berns, CEO of The Arc.

About the Keatons of Milton, West Virginia:

Amanda and Greg Keaton are parents of 18-­month-­old Graysen, who has DiGeorge Syndrome. DiGeorge 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.

About the O’Briens of Waycross, Georgia:

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.

About the Rodriguezes of Tomball, Texas:

Natalie and Ruben are parents of 31-­year-­old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking,
and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia:

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.

The stories these families have shared with the White House dramatically illustrate the findings from the The Arc’s recently released report Family and Individual Needs for Disability Supports (FINDS). The FINDS survey of nearly 5,000 family respondents demonstrates that families across the country have similar experiences. For example:

  • One-­third of parents and caregivers reported that they are on waiting lists for government funded services, with the average wait more than five years.
  • One out of five families report that someone in the family had to quit a job to stay at home and support the needs of a family member.
  • Most family caregivers (58%) provide more than 40 hours of care per week (including 40% who provide more than 80 hours of care per week). This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
  • Sixty two percent of caregivers reported a decrease in services for their family member with a disability.

“These statistics came to life at the White House today, as these families exemplify what it means to be on a waiting list for services for nine years, and what life looks like when parents face a choice between working and caring for their loved one,” said Marty Ford, The Arc’s public policy director.

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.

Reflections on Tracy Morgan, Other Celebrities and the “R-Word”

This week, when The Arc staff learned of Tracy Morgan’s comments in a recent comedy show in New York City, we knew we had to respond. Not because we are against free speech – as an organization dedicated to protecting the rights of people with intellectual and developmental disabilities, we wholeheartedly support freedom of speech and other constitutional rights. We responded because we don’t like to see hateful, hurtful speech aimed at people with disabilities.

Tracy Morgan is a very successful comedian who made a joke that he thought was funny in the moment, and certainly anyone has a right to laugh at whatever jokes he or she wants. Some people think we’re being oversensitive, and that’s understandable. Mr. Morgan has more leeway because of what he does – making people laugh – and that means he pushes boundaries and social norms. We can appreciate that, but what we don’t think he realized is that the language he used is hurtful to many, many people. And it’s The Arc’s job to stand up for them.

This isn’t about free speech, defining comedy or free publicity as much as it’s about making sure society treats people with disabilities with respect.

In the last year, we’ve called out NBA star LeBron James and former White House chief of staff Rahm Emanuel for using similar language. And each time, it has sparked a lively conversation about free speech and human rights. We’re thrilled to be a part of this debate because these public figures (and everyone else in the conversation) can share with all of society why the “r-word” and other derogatory terms directed at people with intellectual and developmental disabilities are not okay.

People have a right to express themselves. And we at The Arc can take a joke, but we are compelled to stand up when it crosses into territory that hurts the people we represent.