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.

A Conversation with Brian Armour About Disability Prevalence Among Healthy Weight, Overweight, and Obese Adults

Patient-assessors-weist-measure

Brian 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 System (http://dhds.cdc.gov/). We asked Brian to discuss findings from the study he led, entitled Estimating Disability Prevalence Among Adults by Body Mass Index: 2003–2009 National Health Interview Survey” (Armour BS, Courtney-Long E, Campbell VA, Wethington HR. Prev Chronic Dis. 2012; 9: E178. Published online 2012 December 27).

In your article, you assess the number of people who are obese, overweight, or healthy weight and who report having a disability. Why do you think it is important to look at whether people who have weight issues also have disabilities?
This information can help public health programs better recognize the need to design obesity prevention and treatment programs that are inclusive of people with disabilities.

What did you find out?
We found that 41 percent of US adults who are obese also reported having a disability. We also found out that mobility limitation was one of the most frequently reported types of disability among people who are obese.

What does this mean for public health programs?
Public health programs should be considering the needs of those with disabilities when designing their obesity prevention and treatment programs. There are many resources public health organizations can use to help make sure that they are thinking of the needs of people with disabilities. Two good resources include the “Disability Inclusion” section on the CDC’s website as well as the Inclusive Community Health Implementation Package (iChip) program run by the National Center on Health and Physical Activity for People with Disabilities (NCHPAD).

Do you have any recommendations for people with disabilities on how to maintain their weight and avoid becoming obese?
Everyone is different, but it is important that we all are physically active, eat better, and talk to a doctor when not feeling well! People who need help keeping a healthy weight can check out the “Healthy Weight” section of the CDC website for tools to use to help maintain a healthy weight.

Is there anything else you want to say?
Identifying health issues that people with disabilities experience is important, but we also need to help improve the health of people with disabilities by promoting inclusion. This means making sure that people with disabilities are included in all aspects of community life—in our gyms, healthy eating programs, walking paths, transportation and more.

Senate Acts on Zika Funding; The Arc Urges House to Step Up

Washington, DC – With a new public health threat on the horizon for our country, yesterday the U.S. Senate finally acted to provide some of the funding necessary to address the Zika virus. With repurposed funding running out and summer quickly approaching, The Arc and our national network of advocates are urging the House to step up and pass a bill that provides funding to address this issue.

“The clock is ticking, and with every passing day, we are less and less prepared to face this impending public health crisis. We have the ability to mitigate the impact of this mosquito- carried virus, with an investment in mosquito reduction, accelerated vaccine development, and better testing. But Congress has been wasting time, playing politics with public health. Thankfully, the Senate’s action yesterday to approve a down payment on addressing this issue is a step in the right direction. We urge the House to follow suit quickly,” 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. But that’s far short of the amount health officials say they need to be effective and that funding will run out at the end of June. Yesterday, the Senate approved $1.1 billion to combat Zika this year and next year.

While Zika is usually harmless to adults, 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 severe disabilities.

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.

The Arc Awarded Grant from Amerigroup Foundation for Health and Fitness for All Project

Washington, DC – The Arc is pleased to announce that it has been awarded a $90,000 grant from the Amerigroup Foundation to conduct its Health and Fitness for All project at three chapters of The Arc in Texas and Tennessee. The Health and Fitness for All project utilizes the HealthMatters™ program, which is a training developed by the University of Illinois at Chicago that provides structured information on how to organize and start a tailored physical activity and health education program for people with intellectual and developmental disabilities (I/DD).

With Amerigroup Foundation’s support, three of The Arc’s chapters that are certified in the HealthMatters program, The Arc San Antonio, The Arc Greater Houston, and The Arc Tennessee, will implement the 12-week program to help increase participant’s knowledge about the importance of healthy eating and staying active.

“We are thrilled to be expanding this program with chapters of The Arc that have already demonstrated a commitment to the health and wellness of people with I/DD in their communities. The Amerigroup Foundation’s support will go a long way in supporting people with I/DD to make healthier decisions in their day to day lives,” said Peter Berns, CEO of The Arc.

According to the Centers for Disease Control, adults with disabilities have a 58% higher rate of obesity than adults without disabilities. Since The Arc started using the HealthMatters curriculum in 2012, the program has reached almost 500 participants to help them learn about healthy eating and the importance of staying active. The chapter activities being supported by Anthem, known as Amerigroup in those states, will reach a total of 150 participants.

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 665 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.

Learn How HealthMeet® is Promoting Healthy Lives!

In 2012, The Arc launched the HealthMeet® project because we believe people with intellectual disabilities (ID) should have access to high quality, comprehensive, and affordable health care. HealthMeet® offers free community-based health assessments to people with ID at selected chapters in California, Massachusetts, New Jersey, North Carolina, and Pennsylvania. Over 1,500 people have been assessed through the HealthMeet initiative and 9 percent of those participants reported to have an autism spectrum disorder. At The Arc, we believe that Autism Acceptance is promoting healthy lifestyles.

Overall, HealthMeet® has been a positive experience for participants and chapters of The Arc involved in the project. The health assessments provide an opportunity for participants to be assessed in the areas of vital signs and body composition, respiratory health, vision, hearing, oral health, and foot and mobility issues. Participants also feel empowered to take charge of their health by engaging in dialogue with health assessors about the status of their health and recommendations for follow-up care. As Erika Hagensen of The Arc of North Carolina has noted “health is not a taboo topic, it’s an empowering topic.”

The chapters of The Arc involved in HealthMeet® have leveraged community resources and developed partnerships with local entities such as public health departments, nursing schools, and medical schools. HealthMeet® has also been a learning experience for many of the healthcare professionals that conduct the health assessments because they now feel more equipped to serve people with ID. Through HealthMeet®, healthcare providers have developed better communication skills that will ultimately help them serve the participant’s healthcare needs.

To learn more about how The Arc is increasing health opportunities for people with ID view this video:

If you are a healthcare provider, national organization of healthcare providers, caregiver, chapter of The Arc, or service provider (not affiliated with The Arc), we ask that you join our effort to increase your knowledge of the I/DD community and serve people with I/DD. Learn more by viewing this video:

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (I/DD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with I/DD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with I/DD. HealthMeet is supported through at $1 million cooperative agreement with the Centers for Disease Control and Prevention. For more information on the HealthMeet project, contact Jennifer Sladen at sladen@thearc.org.