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

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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.

What is Disability? The Department of Justice Releases Revised Regulations to Implement the Requirements of the ADA Amendments Act of 2008

On August 10, 2016, the Department of Justice (DOJ) released the much anticipated final rule revising the Department’s Americans with Disabilities Act (ADA) Title II (public services) and Title III (public accommodation) regulations to implement the requirements of the ADA Amendments Act of 20009 (ADAAA). The final rule will take effect on October 11, 2016.

The new DOJ regulations provide significant clarification for who is covered under the ADA. The final rule clarifies that those with disabilities from cancer, attention deficit hyperactivity disorder, learning disabilities, and other conditions should be protected under the ADA.

In addition to clarifying the term disability, the final rule provides a non-exhaustive list in defining major life activities, and adds rules of construction to be applied when determining whether an impairment substantially limits a major life activity.  DOJ states that the goal is to ensure the ADA is construed broadly in favor of expansive coverage, thereby meeting the original Congressional intent.

Although the ADAA is already in effect and applies to all entities covered under Title II and Title III (employment) of the ADA, DOJ’s changes to the regulations will assist in the interpretation and application of the ADAAA. The ADAAA’s provisions regarding the definition of disability will also apply to Title I of the ADA.

The final rule includes clear language that individuals with intellectual disabilities are covered under the ADA and the ADAAA. The analysis in the rule makes it clear the intent of Congress was to protect individuals with I/DD even where a mitigating measure, medication, etc., might lessen the impact of an individual’s disability.

The Arc Commends Department of Justice’s Report on Investigation of the Baltimore City Police Department

Washington, DC – Last week, the Department of Justice’s (DOJ) Civil Rights Division released a report following an investigation into the past conduct of the Baltimore City Police Department (BPD). DOJ concluded that there is “reasonable cause to believe that BPD engaged in a pattern or practice of conduct that violates the Constitution or federal law” by engaging in unconstitutional stops, searches, and arrests; using enforcement strategies that produce severe and unjustified disparities in the rates of stops, searches, and arrests of African-Americans; using excessive force; and retaliating against people engaging in constitutionally-protected expression. Among these troubling findings, The Arc noted that the treatment of individuals with disabilities by law enforcement was included in the report, which featured a full section on the use of unreasonable force against individuals with disabilities highlighting that “BPD officers repeatedly fail to make reasonable modifications necessary to avoid discrimination in violation of Title II of the Americans with Disabilities Act of 1990 (ADA).”

Among other things, the investigation recommended that BPD offer crisis intervention training, previously offered to only new recruits, to veteran officers as well. DOJ noted that such training helps officers “identify whether an individual is in crisis or engaging in behavior related to a disability, to interact effectively with people with disabilities, to de-escalate a crisis, and to connect the individual with local resources to provide treatment or support.”

“Far too often, people with intellectual and developmental disabilities are in situations with law enforcement that unnecessarily escalate because officers aren’t trained in crisis prevention or how to recognize and accommodate various disabilities. This is not only happening in Maryland, it is a serious problem nationwide. We have got to flip the script when it comes to law enforcement training so that police departments understand that recognizing and appropriately accommodating disability in the line of duty is not optional, but is a fundamental aspect of their compliance with civil rights laws, such as the ADA. The recommendations in this report should be adopted across the country, so that we can break the cycle of discrimination that many minorities, including people with disabilities, face, and make our communities safer and more just for all,” said Leigh Ann Davis, Director, Criminal Justice Initiatives, The Arc.

The report found that BPD officers “have escalated interactions that did not initially involve criminal behavior, resulting in the arrest of, or use of force against, individuals in crisis, or with mental health disabilities or I/DD, or unnecessary hospitalization of the person with mental health disabilities or I/DD.” These unnecessary hospitalizations often violate the “integration mandate” of the ADA and the landmark Olmstead decision, which require public entities to administer services, programs, and activities for people with disabilities in the most integrated setting appropriate and prohibits unjustified institutionalization of people with disabilities.

“The findings in the report are disturbing. It is particularly painful reading this report on the heels of the 26th Anniversary of the ADA. The Arc Maryland stands ready to assist with necessary training to police officers to appropriately respond to people with I/DD. We urge BPD to implement specialized training and de-escalation techniques as tactics to reform the system and better serve people with disabilities, African Americans, and any other member of the community that interacts with the criminal justice system,” said Poetri Deal, Director of Public Policy & Advocacy, The Arc Maryland.

Steve Morgan, Executive Director, The Arc Baltimore, said: “The BPD is already working with us to extend the crisis intervention training, previously offered to select officers only, to the entire force. We are working together to address the recommendations, expand their knowledge, and improve community relations.”

The Arc runs the National Center for Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (or I/DD) under one roof.

NCCJD is a national clearinghouse for information and training on the topic of people with I/DD as victims, witnesses and suspects or offenders of crime. The Center provides training and technical assistance, an online resource library, white papers, and more. The Center created Pathways to Justice,® a comprehensive training program facilitated through chapters of The Arc, which assists officers to both identify disability, and know how to respond in ways that keep all parties as safe as possible. Pathways to Justice utilizes a multi-disciplinary response that provides a foundation for a collaborative approach among community partners.

Read more about The Arc’s take on criminal justice reform and people with I/DD in our recent blog in the Huffington Post.

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, including 11 in Maryland, 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’s Statement on Overturning of Brendan Dassey’s Murder Conviction 

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released the following statement on the news that a judge has overturned the murder conviction of Brendan Dassey:

“This must be a bittersweet ruling for Brendan Dassey and his family. Brendan’s experience has been unique, thanks to Making a Murderer. The documentary revealed to the masses just how easy it is to force a confession from people with intellectual and developmental disabilities.

“My hope is that those following this case will come to realize that our jails and prisons are full of Brendan Dasseys, that false confessions are much more common among those with intellectual and developmental disabilities, and that there is something we can do about it to prevent future injustice.

“Police officers, investigators, attorneys, correctional officers, and others are not adequately trained to identify people who may have an intellectual disability or how to accommodate their needs, and this is especially critical during interrogations. We still have a long way to go to bend the arc of justice when it comes to fair and just treatment of people with disabilities in the criminal justice system. The Arc is committed to revealing the many forms injustice takes in their lives, and working with those in the system to fix it,” said Leigh Ann Davis, Director, Criminal Justice Initiatives.

While people with intellectual and developmental disabilities comprise 2% to 3% of the general population, they represent 4% to 10% of the prison population. Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Long before Brendan Dassey’s case hit mainstream media, Robert Perske, respected author, advocate and long-time supporter of The Arc, compiled a list of people with intellectual disability who gave false confessions to begin documenting these otherwise hidden-away cases.

The Arc runs the National Center for Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (or I/DD) under one roof.

NCCJD is a national clearinghouse for information and training on the topic of people with I/DD as victims, witnesses and suspects or offenders of crime. The Center provides training and technical assistance, an online resource library, white papers, and more. The Center created Pathways to Justice,® a comprehensive training program facilitated through chapters of The Arc, which assists officers to both identify disability, and know how to respond in ways that keep all parties as safe as possible. NCCJD is building the capacity of the criminal justice system to respond to gaps in existing services for people with disabilities, focusing on people with I/DD who remain a hidden population within the criminal justice system with little or no access to advocacy supports or services.

Read more about The Arc’s take on criminal justice reform and people with I/DD in our recent blog in the Huffington Post.

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’s Letter of Support for DOJ Investigation of Arnaldo Rios Case

Charles Kinsey, a direct support professional for people with intellectual and developmental disabilities, was shot in a situation involving one of the individuals he served, Arnaldo Rios. Following this incident in North Miami, Florida, our network was shocked by how this situation needlessly escalated. Then the news broke that the officer involved in this shooting had the intention of shooting Mr. Rios.

In the aftermath, Mr. Rios has been institutionalized in a psychiatric unit. Below is The Arc’s letter to the Department of Justice supporting an investigation of this case. You can also read our statement here.

 

Rebecca Bond

Chief

Disability Rights Section – 1425 NYAV

Civil Rights Division

U.S. Department of Justice

950 Pennsylvania Avenue, NW

Washington, D.C. 20530

 

Re: The Arc’s Letter of Support for DOJ Investigation of Arnaldo Rios Case

Dear Disability Rights Section Chief Bond:
I am writing to offer the support of The Arc of the United States (The Arc) for a letter from Matthew Dietz, the attorney for Arnaldo Rios, calling for the U.S. Department of Justice (DOJ) to investigate the North Miami Police Department and the State of Florida.

 
Mr. Rios is an individual with autism who was recently institutionalized in a psychiatric unit following the police’s shooting of his behavioral therapist, Charles Kinsey. Following the shooting, the representative for the officer involved stated to the media that the intention was not to shoot Mr. Kinsey, but to shoot Mr. Rios. Mr. Dietz’s letter, attached here for your reference, calls for the Department of Justice to open an investigation of the North Miami Police Department for its actions and statements involving Mr. Rios and Mr. Kinsey as well as the State of Florida for its failure to provide appropriate community placement to Mr. Rios following the incident. The Arc strongly agrees that such an investigation is necessary and warranted.

 
With nearly 700 state and local chapters nationwide, The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families. The Arc promotes and protects the civil and human rights of people with I/DD and actively supports their full inclusion and participation in the community throughout their lifetimes. Through our National Center on Criminal Justice and Disability, we seek to build the capacity of the criminal justice system to respond to gaps in existing services for people with I/DD, ensure appropriate accommodations are provided via the Americans with Disabilities Act, and provide necessary trainings for law enforcement, attorneys, and judges on how to recognize various intellectual and developmental disabilities and how to appropriately interact with individuals with such disabilities.

 
When individuals with I/DD become involved in the criminal justice system as victims, witnesses, suspects, defendants, or incarcerated individuals, they face fear, prejudice, and lack of understanding. As was apparent in this case, law enforcement personnel often lack accurate and appropriate knowledge to apply standards of due process in a manner that provides justice for individuals with I/DD. In addition to improving the quality and prevalence of police training, The Arc supports a community-based crisis management system model, which includes time-based protocols for in-home responses and options for acute placement and is proven to reduce critical incidents, failed placements, and re-admission to psychiatric facilities for community-based clients.
Further, The Arc’s position, strongly supported by Olmstead v. L.C., 527 U.S. 581 (1999), is that individuals with I/DD deserve the opportunity for a full life in their community where they can live, learn, work, and socialize. To achieve this goal, they need a comprehensive, person-centered and directed, national system of appropriate high quality long-term supports and services, with a reliable and immediately accessible funding source, including Medicaid, and a well-trained, fairly compensated workforce of providers and direct support professionals. The prevalence of people waiting for services and supports is an unacceptable national crisis. It is not only a choice but also a basic civil right that individuals have adequate and appropriate supports and services needed for them to live in the community. Services must be delivered promptly in the most integrated setting and with sufficient quality and quantity to meet individual needs.

 
Neither Mr. Rios nor Mr. Kinsey did anything to warrant the police shooting that occurred. Thankfully, Mr. Kinsey survived the shooting and has been released from the hospital. Unfortunately, due to untreated trauma and a severe lack of appropriate community placements, Mr. Rios remains institutionalized in a psychiatric unit, isolated from the community.

 
The Arc is deeply troubled by the actions of the North Miami Police Department against Mr. Rios and Mr. Kinsey, the State of Florida’s failure to find community placements for individuals with I/DD who require intensive behavioral therapy, and its policy of reimbursing institutional placements at significantly higher rates than community placements. In light of the above, we urge the Department of Justice to investigate the actions of both the North Miami Police Department and the State of Florida in this matter. It is vital that Mr. Rios secures an appropriate community placement as soon as possible.

 

Sincerely,

 

Shira Wakschlag

Staff Attorney & Special Assistant to the CEO

The Arc of the United States

202-534-3708

Wakschlag@TheArc.org

 

Celebrating Friendship

Sisters Holding Hands[1]By Jennifer Sladen, Program Manager, National Initiatives

In the hope that fostering friendships between people with different backgrounds, countries, and cultures would lead to peace by inspiring communities to connect with and better understand each other, the United Nations General Assembly proclaimed July 30th International Day of Friendship. On this sixth International Day of Friendship, let’s take a moment to reflect on how we can support people with intellectual and developmental disabilities (I/DD) to be a part of this drive to make connections and create friendships.

A few years ago, I attended a conference for direct support professionals. Al Condeluci, the CEO of Community Living and Support Services (CLASS) in Pennsylvania and a partner in the Interdependence Network, addressed the room, asking a simple question – “Who is the best friend of the person with I/DD you serve?”

The room was silent. Not because no one knew the answer, but because no one wanted to say the answer.

Dr. Condeluci pressed the group, “Who is their best friend?”

A voice near him spoke quietly, “Me.” Around the room, professionals started nodding their heads in agreement.

Silently, Dr. Condeluci walked back to the center of the room. After a pause, he said, “Being friends with the people we serve is great, but we are not always going to be there. Success is not going to an amusement park and hanging out with people with I/DD but hanging out a seat or two behind the person with I/DD and their friend on the roller coaster.”

All around the room, lightbulbs went off in people’s heads. Hands raised, asking for help and advice on how to make this happen for the people they serve.

Dr. Condeluci’s answer was not complex:

  • Give people the opportunity to form friendships with new people of all abilities, not just the professionals they interact with.
  • Encourage the people you serve to engage actively in the world and with the people around them.
  • Educate people who are uncomfortable around or ignorant about people with disabilities to encourage them to make these friendships.

Thanks to shows like A&E’s reality show, “Born This Way”, as well as the increasing number of characters with disabilities in movies and TV shows, the dialogue around our country about how people with I/DD make friends, date, and live independently is growing. But, all of us can do more to make sure that people with I/DD in our lives have opportunities to connect with people of all abilities.

People with I/DD, here are a few ideas on connecting socially:

  • Pursue activities and opportunities based on your own interests. After you have decided what you would enjoy, think about what support you will need to participate and who you would like to provide that support. If it turns out that there aren’t other people with I/DD who participate, go ahead. You can be a trailblazer!
  • Seek out friendships with whomever you want to be friends with.
  • Be yourself and open to new activities and new friendships.
  • If you have trouble making new friends or if you have disagreements with friends, talk to the people you trust about how to address these issues.
  • Advocate to include other people with I/DD in events and activities you attend.

 

Families and Professionals, you can:

  • Encourage people you know to include people with I/DD in events and activities and promote understanding by talking about the value that the people with I/DD bring to your life.
  • Make space and time for people with I/DD to make friends, pursue activities, and participate in the community.
  • Encourage new experiences, especially if the person is scared or unsure.

We encourage you to explore The Arc’s Center for Future Planning for ideas about how to build relationships and pursue new experiences. And, if you are a fan of “Born This Way”, register today to attend The Arc’s 2016 National Convention and International Forum to meet the cast!

The Arc’s Statement on the Shooting of Unarmed Caregiver in Florida

Washington, DC – The Arc, the nation’s largest civil rights organization for people with intellectual and developmental disabilities (I/DD) and their families, released the following statement on the news that Charles Kinsey, a caregiver (commonly known as direct support professional) for people with disabilities, was shot while supporting a young man with autism:

“Earlier this week Charles Kinsey, a direct support professional for individuals with developmental disabilities, was shot in a situation that needlessly escalated. Individuals like Charles play an invaluable role in the lives of those they support. It isn’t uncommon for their clients to see them as extended family and often direct support professionals put the wellbeing of those they are supporting ahead of their own, as was the case in this situation.

“While all the details of this incident have not been released, this case highlights a growing issue in our nation – the lack of training for law enforcement on how to safely and effectively interact with people with intellectual and developmental disabilities. From Ethan Saylor to Neli Latson and now Charles Kinsey, we continue to see how lack of training on supporting individuals with disabilities can pose a threat to the safety of our extended community. The fact of the matter is this incident was preventable. Collaboration between law enforcement and the disability community is the key to preventing future cases like this. We welcome the opportunity to work with law enforcement to help improve our criminal justice system and prevent future tragedy and injustice,” said Peter Berns, CEO of The Arc.

“While staff are sometimes injured performing their job duties, we do not see them injured by law enforcement who so often answer our calls for assistance in our work. While we do not yet know all of the facts, it appears that Mr. Kinsey, like so many staff working with persons with disabilities would do, tried to protect the person he was charged with caring for. We hope for a full and speedy recovery for Mr. Kinsey,” said Deborah Linton, CEO, The Arc of Florida

The Arc’s National Center for Criminal Justice and Disability® was established in 2013 to address situations like this, and the critical need for effective, evidence-based training for law enforcement and others in the criminal justice system. Funded by the Bureau of Justice Assistance, The Center created Pathways to Justice,™ a comprehensive training program facilitated through chapters of The Arc, which assists officers to both identify disability, and know how to respond in ways that keep all parties as safe as possible. This innovative training emphasizes a shift in thinking away from “crisis intervention” alone, to “crisis prevention” which promotes a problem-solving attitude among officers and helps them to define what is truly a crisis, and what is not. Piloted in five states to date, the training is being rolled out in six additional states in 2017.

The Arc and LSA form National Collaboration to Support Aging Caregivers and their Family Members with Disabilities to Plan for the Future

Washington, DC – Lutheran Services in America, Incorporated (LSA), is proud to collaborate with The Arc of the United States’ Center for Future Planning on an initiative to connect older caregivers who support a family member with intellectual and developmental disability to future planning resources.

The Arc has engaged a number of national and state partners to participate in this project including The Arc of North Carolina, The Arc of Tennessee, The National Council on Aging, the Association of Jewish Family & and Children’s Agencies, the University of Illinois in Chicago’s (UIC) Department of Disability and Human Development, and LSA. This one-year project is made possible through a grant to The Arc from The Retirement Research Foundation, a national foundation dedicated to improving the lives of our nation’s elders.

LSA is pleased to engage its member in North Carolina, Lutheran Services Carolinas (LSC), to support the work of this important effort. LSA will work closely with LSC and The Arc to help raise awareness for the future planning needs of aging caregivers in North Carolina and across the country.

According to The Arc, research shows that many aging caregivers are isolated or disconnected from disability services. This initiative will provide training to human services agency staff to conduct in-person outreach to seniors over the age of 65 providing direct support to an adult with intellectual and developmental disabilities; bring information on future planning resources; and encourage caregivers to initiate the future planning process. This collaborative approach among national, state, and local aging, disability, and faith-based human services organizations will leverage the array of resources necessary to reach out to aging caregivers in two states and support them to plan for their family member’s future.

“In our country today, there are nearly one million households with an adult with intellectual and developmental disabilities who is being cared for by someone over the age of 60,” said Charlotte Haberaecker, President and CEO of LSA. “In nearly two-thirds of these families, there is no plan for the future. Through this partnership, we will be able to reach deeper into the communities our human services agencies serve and look for new ways to connect caregivers with the services they need to take the important steps in planning for the ongoing care of their sons and daughters. This project meets a vital need for older adults, especially those who are not connected to the disability community or the social service system.”

“We are excited to work hand-in-hand with The Arc to recruit trainees and help raise awareness about the future planning needs of aging caregivers across our region. Through the relationships we have in our communities and the partners on this project, we will be able to reach senior caregivers more effectively. When you combine our work at LSC with the national scope of the partners on this project, the opportunity to improve the quality of life for caregivers and their adult children has potential to make a real difference in communities across the country.”  Ted Goins, President and Chief Executive Officer of LSC.

“The Arc is first and foremost a family organization. We were founded over 65 years ago around a kitchen table by family members who wanted the best life for their loved ones with intellectual and developmental disabilities. Decades have passed and much has changed, but our commitment to supporting families hasn’t wavered.”

 “People with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan. Creating a plan for the future isn’t a simple task which is why we want to support caregivers by helping them navigate the systems in place and provide them with every resource we can. We are extremely grateful to The Retirement Research Foundation for funding our work and look forward to working with LSA, an organization that shares our commitment to supporting families,” said Peter Berns, CEO of The Arc.

About LSA: Lutheran Services in America, Incorporated (LSA) is one of the largest health and human services networks in the country with more than 300 members that provide a broad range of critical services from health care to children and family services, senior services, disaster relief, refugee services, disability support, housing, and employment support, among others. Collectively, LSA members serve 1 in 50 people each year in thousands of communities across the United States and are open to all regardless of their religious affiliation or social or economic background. The LSA network is ranked at #23 on the Philanthropy 400, an annual listing of top charitable groups, and has combined revenue of $21 billion. LSA is affiliated with the Evangelical Lutheran Church in America (ELCA) and The Lutheran Church-Missouri Synod (LCMS). To learn more, please visit www.lutheranservices.org.

 About The Arc: 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.

A National Call to Action on Toxic Environmental Chemicals

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions.  Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack.  It’s time to change how we do business in prevention.  We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement.  For more information about Project TENDR, see http://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now.  Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

Moving to a New State Can Get Complicated   

By Wendy H. Sheinberg, CELA

Moving to another state is a challenge for most families. If a family member has disabilities, that challenge is even greater. State benefit programs vary, and states administer federal programs at the local level making it even more complex. When a member of your family has disabilities, it pays to do plenty of upfront research and to construct a “safety net” to protect against unanticipated gaps in service, problems and delays.

Health Care

Over the years, you have probably spent considerable time scouting for doctors, therapists, and other service providers to meet your loved one’s specific needs.  Be prepared to start over.

First, there’s the question of insurance. If you have a private policy, perhaps through an employer, moving to a new state may mean a new policy with different coverage or different premiums. If you have purchased coverage under the Affordable Care Act (ACA) through a state insurance exchange, you will need to learn what is available in the new location. ACA typically provides for a 60-day special enrollment period when a permanent move requires a change in health plan. To be safe, check on eligibility requirements early.

Medicaid is even more complicated, since you must reapply once you have moved. It can take anywhere from 15 to 90 days for approval to come through, although coverage will be retroactive. In the meantime, you will need to make other arrangements to handle critical needs.

Medicare is a federal program. Moving to a new state should not affect Medicare benefits. However, it is important to review and confirm that your Medicare supplemental policy and your prescription drug plan provide coverage in the new state.

Once you understand how you will be paying for health care, you will need to determine what resources are available. Local advocacy groups─ such as chapters of The Arc─ will likely be a source for advice and referrals. To minimize disruptions, establish as much of your new provider network as possible ahead of time.

Interview early intervention services and doctors before you relocate—ideally face-to-face, or by traditional or video teleconference, if necessary. Have medical records sent ahead to new physicians and schedule visits as soon as possible once you’ve moved. Ask your new insurance provider to pre-authorize prescriptions, and bring at least a 30-day supply of important medications with you.

Special Education

While the Individuals with Disabilities Education Act (IDEA) requires your new school district to provide services and supports comparable to those provided in the existing Individualized Education Program (IEP), you may have to renegotiate the IEP. Additionally, a 504 plan or other modified curriculum may also require renegotiation. The good news is that your existing records should provide a strong foundation for new discussions. In fact, if it’s time for the current plan to be updated, do so before the move so that your assessments and supporting materials are as current as possible. It can be hard to get school files during the summer, if you are moving during the summer, be sure to get the needed copies before classes end.

For military families, who generally relocate every few years, this is a recurring problem. Check out the Department of Defense’s special ed checklist.

Decision-Making Supports and Guardianship

Decision-making support can vary from state to state. If your adult child has executed a power of attorney, health care proxy or a supported decision-making agreement, consult with a special needs attorney in the new state to confirm their validity.

If your family member has a court-appointed guardian, you should consult a special needs attorney in both locations to understand your particular situation. Some states require that the guardian obtain court approval before the person under guardianship moves to another jurisdiction. You may also want to take this opportunity to explore a less restrictive means of providing support in the new state.

 

Many states do not recognize guardianships granted elsewhere. Unless both states have signed a reciprocity agreement, you could face different definitions of capacity, restrictions on a guardian’s role and more. Even if your new state will recognize a guardianship originated in your home state, most uniform guardianship statutes require some form of filing with the court in the new state.

SSI/SSDI

If you inform the Social Security Administration of your new address early, there should be no disruption to your SSI (Supplemental Security Income) or Social Security disability benefits. However, the amount of your monthly SSI payment could change, since it has both federal and state components. There will be no difference in Social Security disability benefits, based on work history of the individual or their parent.

SNAP (Food Stamps)

Check regulations in your new home state ahead of time, since there are differences in how this federal program is implemented locally. In some areas, there are significant asset limits for people with disabilities.

Social Service Agencies

Day care, in-home services, social programs, career assistance and other supports vary greatly from state to state.  Do your research well in advance to understand what awaits you.

Medicaid Waivers

While Medicaid eligibility is based on federal law, the eligibility standards, services, and support available through Medicaid waivers vary dramatically between states. These services include case management, residential services, employment services, and other non-residential services. An important consideration is that many states have years-long waiting lists for services, and new residents must reapply and go to the end of the line.

Housing

  • Home Ownership– Accessibility features may be high on your list, and it could be necessary to make alterations to your new residence. Architects or housing planners may be willing to view properties on your behalf and to advise on costs, which can differ sharply from state to state.
  • Section 8 vouchers – This is a national rent subsidy program, so if you already have a voucher, it will be recognized anywhere in the U.S. However, you will be responsible for letting your current Public Housing Authority know that you wish to move, working with the Public Housing Authority in your new area to locate your own housing, and terminating your current lease in accordance with its terms. “Portability” in Section 8 housing is very complicated and there are many pitfalls. See: https://portal.hud.gov/hudportal/documents/huddoc?id=DOC_35623.pdf

Special Needs Trusts (SNTs)

Have any special needs trusts (SNTs) checked by a special needs attorney in your new home state as soon as possible, since it may be necessary to have technical corrections/amendments made.

ABLE Savings Accounts

At this writing, 46 out of 51 states have enacted ABLE Act legislation, and many states are beginning to launch their ABLE programs. The original ABLE account legislation required the creation of the ABLE account in the individual’s state of residence. The December 15, 2015, amendment of the Able Act, as part of the Tax Extenders Package, removed the residency requirement. If the individual moves to a new state, the move will not affect the validity of the existing ABLE account. When moving, it is important to remember that each individual may only have one ABLE account. While you do not have to open a new account in the new state, if you decide to have a local account, be sure to follow all procedures to transfer the account so that there is only one account in existence.

Disability Parking Permits

To avoid delays in obtaining a disability-parking permit, try to register cars and vans ahead of time by having a family member relocate early. You’d be surprised how long this can take in some states.

The regulations and paperwork involved in crossing state lines can be dizzying. Delays and omissions can have serious repercussions for your loved one’s quality of life. Unfortunately, there’s no way to make this process easy, but if you begin planning early, you can lower your family’s stress level.

Think about keeping a binder with important documents that you update each year.  Another option is scanning and filing documents online in a “cloud” account, which will save you from combing through boxes upon arrival in your new home.

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.