Chapters of The Arc are Getting Media Coverage on the ACA and Medicaid

Members of Congress are constantly seeking ways to know what’s going on back home and what their constituents care about. One way their offices do this is by monitoring their local and state newspapers every day. When constituents get published or quoted, members of Congress and their staff pay attention.

Several chapters of The Arc have gotten such well-deserved attention in the last several weeks. They have clearly and persuasively articulated the concerns of thousands of people with intellectual and developmental disabilities (I/DD) in their communities regarding the Affordable Care Act (ACA) and the Medicaid program.

David Thielen, CEO of The Arc of East Central Iowa, had a guest column printed in the Iowa Gazette at the end of December regarding the effects of block granting Medicaid. He made the point that there are only three main levers when costs are shifted to cash-strapped states under a block grant – reducing eligibility, limiting services and supports, and cutting reimbursement to providers. Three weeks later, he followed up with another guest column published in the Cedar Rapids Gazette explaining the tangible benefits of the ACA to individuals with I/DD. These include improvements to long-term supports and services, tax credits to improve affordability of health insurance, banning discrimination based on pre-existing condition, ending annual and lifetime caps, and requiring plans to provide a comprehensive set of benefits including rehabilitative and habilitative services and devices.

Robert Hage, President of The Arc of New Jersey wrote a letter to the editor on January 15 that appeared in five local news outlets. He discussed the increased access to private insurance and Medicaid expansion provided by the ACA, and noted that “repeal may make a good soundbite – but what Americans with I/DD need now is more than talk – they need action that keeps the promise of the ACA.”

Three other chapters were interviewed in news stories in January, including a television interview. Nancy Murray of The Arc of Greater Pittsburg at ACHIEVA was quoted in the Pittsburgh Post-Gazette regarding Medicaid block grants, “Right now, [this] is the No. 1 concern among disability advocates. We are scared to death.” In an article in the Wisconsin State Journal, Lisa Pugh of The Arc Wisconsin reinforced the few, stark options that states would face under a block grant, “Any form of a reduced funding structure from the federal government means likely one of three things: cuts to programs, cuts to benefits, or elimination of certain populations of people in Medicaid.”

Heather Denman, Executive Director of The Arc of Harrison and Rockingham, appeared in a segment on Virginia’s WHSV 3 to highlighted the ACA’s provisions on ending annual and lifetime caps on health insurance coverage, eliminating pre-existing condition discrimination, and providing funding for services outside of institutions. “The biggest piece is just taking something away and not having anything that is there to replace it and worrying about people who have preexisting conditions,” she stated.

The Arc is proud of its network of over 660 chapters across the country who work hard everyday advocating for people with I/DD and their families. We are pleased to see more and more in the press as a result of this as informed and passionate spokespersons.

Building the Bridge to Inclusion through Technology

Many day-to-day technology tasks have become so intuitive for many of us that it’s easy to forget life before these clicks and swipes. For people with I/DD, these skills can make a world of difference by building bridges to community participation.

In 2016, through our partnership with Comcast NBCUniversal, six chapters across the country hosted “Learning Labs” to foster digital literacy skills in their constituents. The classes’ content varied between chapters based on individual needs:

The Arc Baltimore (Maryland)
The Arc Baltimore’s labs provided an overview of Assistive Technology and a demonstration of devices and software to address communication, computer access, eating, environmental control, hearing, home safety, memory and cognition, telephone access, recreation, and vision. Stories were shared on how individuals have utilized devices. A certified Assistive Technology Professional worked one-on-one with participants to identify and experiment with tools that would be a good fit for them.

Easter Seals Arc of Northern IN (Indiana)
Easter Seals/The Arc of Northern Indiana hosted an instructional computer lab focusing on life skills, employment, internet safety, and money management. The session was so successful that one participant found a job he was interested during the class. The next day, he submitted an application online for that job at Game Stop and landed an interview.

The Arc of Prince George’s County (Maryland)
The Arc of PG County hosted labs covering topics related to independent living, including eating healthy, resume building, tech tools for reading, grocery shopping, job seeking/applications, money value, and understanding maps. At the conclusion of the event, local companies even pledged to employ more people with I/DD! One participant, Brianna, found a screen reader helpful—it helped her pronounce words correctly in addition to easier reading. She compared it to audible books and thinks it “unleashes the power of spoken words”.

NewStar Services (Illinois)
NewStar’s labs had a strong focus on iPad skills, including skills for independent living like taking pictures, iMovie, iModeling, maps, planning a trip, and setting and using reminders. Three Learning Lab participants, David, April, and Charles, requested additional labs on the Maps app, and were surprised to learn that there are bus stops extremely close to their houses that will help them gain independent access to the community.

The Arc of San Francisco (California)
The Arc of San Francisco’s labs were centered on using technology for independence and employment. Topics covered included internet safety, Microsoft, LinkedIn, online job searching, and the basics of email. One participant, Kristin, was struggling with how to best use LinkedIn. After working on her picture, resume, endorsements and recommendations in the lab, Kristin landed interviews at both Google and LinkedIn!

The Arc of Lane County (Oregon)
Topics on computer basics, including terminology, parts, safety/care, and typing, were covered. They worked in Microsoft Word, Publisher, Powerpoint, and used email and iPads. Most importantly, they learned about internet safety issues like identity theft protection, safe passwords, and digital footprints. “When asked about his favorite part of the class Jason exclaimed, “I was really excited to make my resume and get closer to my dream job”.

Through this simple exposure to the basics of digital technology, participants are building the skills that will support them to become more independent within their communities. We look forward to expanding Learning Labs to more chapters and building the skills to succeed in people across the country!

Celebrating 24 Years of the Family and Medical Leave Act

This week, The Arc celebrates the 24th anniversary of the Family and Medical Leave Act (FMLA). This landmark law ensures that millions of workers don’t have to choose between their job and their own health or the health of a family member. Here are three things that people with intellectual and developmental disabilities and their families need to know about the FMLA:

  1. The FMLA offers much-needed leave for workers (including workers with disabilities) and family caregivers. Qualified workers at companies with 50 or more employees can take up to 12 weeks of unpaid family or medical leave each year. The FMLA specifies allowable uses, notably for a worker to address their own serious health condition, to care for a new baby, and to care for a spouse, child, or parent with a serious health condition.
  2. The FMLA protects against job loss. When a worker returns from FMLA leave, the employer must restore the worker to his or her previous job, or an equivalent job with the same pay and benefits.
  3. The FMLA ensures continued access to health insurance. If a worker has employer-sponsored group health insurance, the employer must continue to cover the worker under the same terms and conditions as if the worker had not taken FMLA leave. If the worker’s health insurance covers a family member, that coverage must also continue.

Family and medical leave has always enjoyed widespread public support – but the FMLA was a hard-won victory. Congress considered bills every year for 8 years before finally approving the FMLA on a bipartisan basis. Getting the FMLA across the finish line was testimony to the power of coalition. Organizations representing women, families, workers, seniors, people of faith, businesses, health professionals, and people with disabilities worked closely together to secure the FMLA.

The voices and views of people with disabilities and their families have always been a core part of that advocacy. In the 1980s and 1990s, groups like The Arc were deeply engaged in coalitions working to enact the FMLA, and people with disabilities and family caregivers shared many compelling stories in Congressional hearings and in the media. More recently, thanks to disability community advocacy, in 2015 the Department of Labor clarified that workers can use FMLA leave to care for a sibling with a serious health condition.

The FMLA was an important first step. But more work remains.

Today, about 40 percent of American workers aren’t covered under the FMLA, and many can’t afford to take unpaid leave. Only 14% of workers have paid family leave to care for a new child or seriously ill loved one. And gaps still exist in how you can use FMLA leave, such as being able to use leave to attend a child’s IEP meeting.

That’s why, as The Arc’s Robin Shaffert recently highlighted, we are joining the call for a robust federal paid family and medical leave program that adheres to a core set of principles. All employees must be able to access paid leave of meaningful length and for the full range of needs established in the FMLA. Families come in many shapes and sizes, so “family” must be inclusively defined. Paid leave must be affordable and cost-effective for workers, employers, and the government. And we must ensure that people who take paid leave do not experience adverse employment consequences as a result.

As President Clinton stated when he signed the FMLA into law on February 5, 1993, “Family and medical leave is a matter of pure common sense and a matter of common decency.” We couldn’t agree more. On the FMLA’s 24th anniversary, we celebrate its success and renew our commitment to a robust and inclusive federal paid family and medical leave program.

New Project Announcement: The Arc’s National Center on Criminal Justice and Disabilities® (NCCJD) and The Board Resource Center (BRC)

Building Capacity of Primary Care Providers to Discuss Sexual Violence with Women with Intellectual/Developmental Disabilities

Introduction

In September of this year, The Arc’s National Center on Criminal Justice and Disability® (NCCJD) was awarded a one-year grant from The Special Hope Foundation. Working with The Board Resource Center, a California-based consulting firm, this funding will be used to teach health care professionals about how to address and help prevent sexual violence against women with intellectual/ developmental disabilities (I/DD).

Background

This project will address the alarmingly high rate of sexual violence experienced by women with I/DD. About 20% of all women are sexually abused each year. However, women and girls with developmental disabilities are four to ten times more likely to face sexual abuse. Up to 68% of women with developmental disabilities will be abused before they are 18, and up to 90% will experience abuse during their lives (Valenti-Hein, D. & Schwartz, L. 1995).

Health care providers are in a unique position to have open dialogue about sexual violence prevention with their female patients. However, many times they do not have experience talking about victimization with women with I/DD in a manner that is accessible and culturally competent for all. In order for providers to have meaningful conversations about the high risk of violence people with I/DD face, they need training on effective ways to provide patients with safe environments to share their experiences, often for the first time.

By learning how to use effective plain language communication strategies, they can provide a safe place for women to share openly. These strategies can improve communication with all patients, since plain language strategies apply to a number of different populations who struggle with comprehension of information. Ultimately, this project will improve health care delivery by giving providers effective tools to support women with I/DD to discuss or disclose sexual violence.

Project Objectives

This project, funded by The Special Hope Foundation, builds the capacity of primary care providers to discuss the high risk of sexual violence women with I/DD face. It will equip providers with training and tools to create safe, open, and accessible conversations about what sexual violence is and what women can do to report it or stop it from happening. Together, and under the guidance of an advisory committee, we will achieve the following objectives to decrease the incidence of sexual violence: 1) Develop two training videos and materials on discussing sexual violence with female patients. 2) Disseminate tools to health care organizations, regional centers, advocacy groups, and people with I/DD and their families, ultimately reaching 500,000 individuals. 

Both The Arc and The Board Resource Center have a shared vision that emphasizes accessibility, education, and empowerment for people with I/DD.
 

References

Valenti-Hein, D. & Schwartz, L. (1995). The sexual abuse interview for those with developmental disabilities. James Stanfield Company. Santa Barbara: California.

The Arc on the ACA: “For People with Disabilities This is a Matter of Health, Independence, and So Much More”

Washington, DC –  As the U.S. Senate passed a budget resolution that begins the process of repealing the Affordable Care Act (ACA), The Arc released the following statement and background information on why the law is critical for people with intellectual and developmental disabilities (I/DD):

“Repealing the ACA without a replacement turns back the clock to a time when too many people with disabilities were discriminated against in the health insurance market. For those who were lucky enough to find affordable coverage, many were faced life and death care decisions because of arbitrary financial limits under those plans, or were stuck with service or support options that segregated them from the community.

“All people with disabilities need comprehensive, affordable care – the ACA took our country a giant step forward toward accomplishing this goal. The Arc has long supported expanding Medicaid coverage to adults and raising the income eligibility.  Due to those changes, millions of Americans, including people with disabilities, gained access to affordable, comprehensive health care.

“This is about people’s lives – their health, independence, financial stability, and so much more. The clock is ticking for millions of Americans, including people with disabilities,” said Peter Berns, CEO, The Arc.

The ACA made significant progress in expanding access to health care for individuals with I/DD. The ACA allowed states to extend their Medicaid programs to childless adults earning up to 138% of the federal poverty level. This change has provided coverage to individuals with I/DD and other disabilities and chronic health conditions who were not otherwise eligible for Medicaid, were in the waiting period for Medicare, or did not have access to employer sponsored health insurance because they were not working or working in low wage jobs without benefits.

  • The ACA provided federal money to support Medicaid expansion. The additional federal contribution to expanding Medicaid has helped many people with disabilities access health care.  It has also enabled states to continue and expand programs that provide supports and services to people with I/DD.
  • Several provisions of the ACA were designed to assist states to rebalance their long term supports systems, allowing more people with I/DD to receive the services and supports they need while living in the community instead of costly and outdated institutions. These include the Community First Choice Option (CFC) and the State Plan Home and Community-Based Services Option (also known as 1915(k) and 1915(i).
  • The ACA reversed years of discrimination against people with disabilities and chronic health conditions through its insurance reforms. Prior to the ACA, when people with disabilities or chronic health conditions tried to purchase health insurance in the individual market they often could not obtain coverage at all because of their pre-existing conditions; others faced sky high premiums, or were only granted very limited coverage.  

Learn more from The Arc’s ACA fact sheet, and sign up for our Disability Advocacy Network to know when to take action when it matters the most.

From 1959 to Today, Workers Still Need Paid Leave

By Robin Shaffert, Senior Executive Officer, Individual and Family Support, The Arc 

KM_C554e-20161207133340Among my grandmother’s papers was a letter dated May 28, 1959, from her employer, the New York retailer Franklin Simon, informing her, “Due to the fact that your illness will be prolonged over a period of time, we have been forced to replace you at this time.”

“However,” the letter continues, “[W]e wish to let you know that your record with us has been good, and we will be happy to consider you for an opening when you are able to return to work again.” She received “two weeks vacation salary which is due you,” but no sick leave or notice pay.

I was shocked. My grandmother had been fired because she needed surgery. When I found the letter a few years ago, the Family and Medical Leave Act had been the law for almost 20 years. Large employers like Franklin Simon couldn’t just fire employees when they needed time off for medical care. Or, at least, they couldn’t fire many of their full time employees.

Born in Austria-Hungary in 1900, my grandmother came to this country with her husband and her son as a refugee from the Nazis in 1940. A housewife in Vienna, here she worked first in a factory sewing clothes for dolls and later as a saleswoman at Franklin Simon.

By 1959, my grandmother was living alone in a fourth floor walk-up in the Bronx. Her husband had died, and her only son was married and had a new baby. I don’t know what financial hardship my grandmother endured when she lost her job. As far as I know, she never reentered the workforce.

Being able to take time off from work for my own medical care, after the birth of my children, and to care for my parents and my sister who had congenital heart disease is only one of the many ways that life has been easier for me than it was for my grandmother. But even today many people can still be fired if they need to take time off from work. And, for many unpaid leave is an empty promise because they simply can’t afford to take time off without pay.

At The Arc, our mission is to promote and protect the human rights of people with intellectual and developmental disabilities (I/DD) and actively support their full inclusion and participation in the community throughout their lifetimes. People with disabilities and their family members are an important part of the American workforce, and like all working people, they need access to paid leave. In my work, leading the Center for Future Planning®, I focus on the needs of the over 800,000 families in which adults with I/DD live with aging caregivers 60 and over. As these parents age and continue to support their sons and daughters to build full and independent lives, the need for flexibility can be critical.

We are joining the call for a robust federal paid family and medical leave law that adheres to a core set of principles. All employees (regardless of the size of the employer, length of service, and number of hours worked) must be able to access paid leave of meaningful length. People need to take leave for different reasons, and all employees should be able to access paid leave for the full range of personal medical and family caregiving needs established in the Family and Medical Leave Act. Families come in many shapes and sizes, so “family” must be inclusively defined. We must design a program that is affordable and cost-effective for workers, employers, and the government. Finally, we must ensure that people who take the leave do not experience adverse employment consequences as a result.

In the disability community, we know how important it is to celebrate one another in good times and to provide support in harder times. An inclusive and robust paid family leave program is an important building block of that support.

Managing Legal Settlements

By Neal A. Winston, CELA, Special Needs Alliance®

There are many factors to consider when a family member is seeking legal compensation for personal injuries, whether they result from medical malpractice, a car or workplace accident, or some other mishap. Given the supports that an individual with disabilities might need throughout life, even large sums can prove insufficient and must be carefully managed. Personal injury attorneys are often unaware of how a settlement can affect an individual’s eligibility for important public benefits, and families should ensure that a special needs attorney is consulted as early as possible during the course of their suit.

Liens and Set-Asides

Although personal injury awards are usually not taxable, there may be various liens against the settlement which must be satisfied before putting the money to other uses. If Medicaid, Medicare or, in some cases, private insurers have been paying for injury-related care that has been compensated as part of the settlement, they may need to be reimbursed.

In addition, if the individual is currently on Medicare, or is likely to become covered within 30 months, it may be necessary to create a Medicare Set-Aside (MSA) arrangement. While government guidelines are currently unclear, this can have implications for settlements of $25,000 or more, and legal counsel should be consulted.

Assessing Needs

A candid evaluation of the individual’s short- and long-term needs should guide the family in determining how to manage the remaining funds. Of major importance is whether or not means-tested public benefits such as Medicaid and Supplemental Security Income (SSI) will be required. If such programs will play a role, steps should be taken to ensure that settlement funds won’t disqualify the individual from such programs.

Depending on the size of the settlement and immediate needs, it may be possible to quickly “spend down” the award so that its effect on benefits is short-term. Home renovations to improve accessibility or purchase of a van are among many possibilities.

Another option for smaller settlements is placing up to $14,000 per year in an ABLE account for the individual. Funds held in such accounts are not considered when evaluating someone’s eligibility for Medicaid and SSI and can be used for a wide array of needs relating to the person’s disability. A person is limited to a single ABLE account, the disability must have begun before age 26, and the person must be receiving SSI or Social Security disability benefits, or have a doctor’s diagnosis of a disability meeting Social Security’s definition. If the account balance exceeds $100,000, SSI payments will be suspended, but Medicaid services continue. The maximum value of an ABLE account for Medicaid eligibility without SSI is the same as the maximum value of a 529 college savings account in the state in which the ABLE account is opened. Be aware that upon the beneficiary’s death, funds remaining in an ABLE account must be used to pay back Medicaid for any services rendered on the individual’s behalf after the ABLE account is created.

Larger settlements should be protected in a first party special needs trust (SNT) or a “pooled” SNT account.  While individual first party trusts are administered by trustees chosen by the beneficiary, pooled SNTs are administered by nonprofit organizations.

Like an ABLE account, a first party SNT must reimburse Medicaid upon the beneficiary’s death. In some states, part or all of a pooled trust’s remaining funds revert to the administering nonprofit. Any funds left must then reimburse Medicaid before being available to other beneficiaries.

Distributions

Distributions from a first-party SNT are regulated and must be for the exclusive benefit of the individual for whom the trust has been created. If the money is used for food or shelter, it will reduce SSI payments up to a certain limit. The beneficiary cannot have any individual control over distributions from the trust.

Consideration can be given to reimbursement or compensation from the settlement to third parties in certain circumstances and using the proper procedure without causing benefit program penalties. For instance, a family may have run up significant debt while caring for the injured person. They may have resorted to credit cards or borrowed from friends and relatives. If someone gave up a paying job to care for the individual, they may need to be paid for their services to compensate them for lost pay from their regular work. These are all expenses that might properly be handled with settlement money and are best handled prior to creating the SNT. Money should be held in an escrow account, and payment should be made directly to those to whom the money is owed. Benefit programs have different rules, but most involve a written agreement or understanding reached before the services were rendered for the reimbursement or compensation in order to avoid penalties. Funds passing through parents’ hands could also affect eligibility for benefits. If the individual is a minor or an adult with a guardian or conservator, court approval may be required to make any reimbursement.

Even if government benefits are not a consideration, the beneficiary may need assistance managing the award, in which case a settlement protection trust similar to an SNT, can be established. If initially drafted properly, it may be converted to an SNT at a later date, if necessary.

Investments and Award Management

Trustees have discretion to make a wide range of investments. These might include traditional investment accounts, government insured or guaranteed accounts, life insurance or even real estate, either to produce income or to provide a residence for the beneficiary. Generally, the accounts should only invest in moderate or lower risk entities, and the funds should never be loaned to the trustee or family members. Many states have regulations that control investments and distributions from SNTs and other trusts.

For larger awards, structured payments for a portion of the settlement may be considered. This requires the defendant or his/her insurer to purchase, at the time of the settlement, an irrevocable annuity for the beneficiary that guarantees specific periodic or lump sum payments over an agreed-to period of time. If the timed payments will be large enough to affect eligibility for benefits, arrangements should be made for them to be paid into an SNT and/or an ABLE account.

On the plus side, structured payments are exempt from income tax and have scheduled payouts that ensure that money will continue to be available for a stated period. On the other hand, with interest rates at historic lows, the beneficiary may be locked into long-term dependence on low-performing investments.

Seek Advice

The options for handling a legal settlement are many, with interrelated implications. Families should ensure that a special needs attorney is part of their legal team to ensure that eligibility for means-tested benefits is not jeopardized and other disability-related issues are addressed.

 

The Special Needs Alliance (SNA)® is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families. A free manual, “Administering a Special Needs Trust: A Handbook for Trustees,” can be downloaded from the SNA website.

Time to Check Your Health Insurance

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.

If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan or a similar plan. You should carefully review all health insurance notices and updates. Re-enrollment provides an important opportunity to report any changes to your income. If you income has increased, reporting changes to the marketplace may help you avoid paying future penalties.

2017 Open Enrollment
November 1, 2016
Open enrollment begins

December 15, 2016
Enroll before this date to have coverage January 1, 2017

January 31, 2017
Open enrollment ends

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?

Health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.

The Arc Welcomes Long Overdue Initial Zika Prevention Funding Package

Washington, DC – After months of delay, late last night Congress finally approved and sent to President Obama’s desk a funding package for Zika prevention. Some women infected with Zika while pregnant give birth to babies with severely disabling brain injury, including microcephaly.  Many of The Arc’s more than 650 chapters provide supports and services to families and people with a range of disabilities, including significant disabilities. Since 2015, more than 23,000 cases of Zika have been confirmed in the U.S. and its territories, with over 2,000 of these among pregnant women.

“After months of inaction, we are relieved that Congress finally approved funding to address this public health threat. These resources will allow us to slow the spread of Zika until a treatment or vaccine can be developed.

Unfortunately, women will continue to have to wait for years to know the full range of developmental delays that their Zika infections have caused in their children.  Affected children and their families then will enter our nation’s woefully inadequate system for providing services and supports for the millions of people with intellectual and developmental disabilities in communities across the country. The Arc continues to educate Members of Congress and the public about the importance of our lifeline programs, Medicaid and Social Security, for people with disabilities and their families,” said Peter Berns, CEO of The Arc.

In February, the White House asked for $1.9 billion for Zika vaccine development, better testing, and mosquito reduction.  With no action taken by Congress, in April the White House transferred $589 million from money set aside to fight Ebola and other problems to work on Zika prevention efforts.  With that funding dwindling, Congress was at an impasse all summer and into September over the funding level and extraneous items some were attempting to include in the bill that Congress couldn’t agree on. The approved legislation includes $1.1 billion for this effort.

The Arc has long held a position on the prevention of intellectual and developmental disabilities (I/DD), supporting our national efforts to continue to investigate the causes, reduce the incidence and limit the consequences of I/DD through education, clinical and applied research, advocacy, and appropriate supports. We firmly believe that prevention activities do not diminish the value of any individual, but rather strive to maximize independence and enhance quality of life for people with I/DD.

The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

A Conversation with Dr. Brian Armour About Oral Health of People with and Without Disabilities

Patient - teeth checkBrian Armour, PhD is an economist with the Centers for Disease Control and Prevention (CDC). He has spent over 15 years in health services research, including work on helping design the CDC Disability and Health Data (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled “A Profile of State-level Differences in the Oral Health of People with and Without Disabilities, in the U.S., in 2004” (Armour BS, Swanson M, Waldman HB, Perlman SP. Public Health Rep. 2008 Jan-Feb;123(1):67-75).

Why did you want to study state-level differences in oral health of people with disabilities?
While there have been disability-specific studies about oral health, no state-level analysis of the oral health of people with disabilities was available. We wanted to assess the oral health of people with disabilities in each state.

Oral health is as important as other types of health care; and good oral health improves general health, self-esteem, communication, nutrition, and quality of life.

What did you discover?
In the year we observed, people with disabilities were less likely than people without disabilities to visit a dentist or dental clinic. They were more likely to have experienced tooth loss.

Our study showed very different results among states. People with disabilities from Mississippi were much less likely than people with disabilities in Connecticut to have visited the dentist or dental clinic in the last year. Only four percent of people with disabilities in the District of Columbia reported having tooth loss as opposed to almost 19 percent of people with disabilities in Kentucky.

What does this mean for people with disabilities and their families?
It is important for everyone, especially for people with disabilities, to practice good oral health habits, like brushing their teeth regularly and flossing. People who need help finding good oral health habits can visit the “Oral Health” section of the CDC website.

Sometimes, people with disabilities – particularly intellectual or developmental disabilities – need assistance from their families and caregivers to help them practice good oral health. If caregivers need tips on how to promote good oral heath, they can check out “Dental Care Every Day: A Caregiver’s Guide” from the National Institute on Health.