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!

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.


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.


  • 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.







Transferring Guardianship Across State Lines

By Scott C. Suzuki, Esq., Special Needs Alliance

Many individuals with intellectual or developmental disabilities are capable of making their own decisions, with or without support, and do not need a guardian. If, however, a person with disabilities has a guardian, there are likely to be complications that should be considered before one or both of them relocate to a different state. It may, in fact, be a good time to consider whether a more limited guardianship, power of attorney or supported decision-making might suffice.

Laws governing guardianship sometimes differ significantly from one state to the next, and depending on the jurisdiction, you could find yourself bogged down in red tape for months. The definition of “capacity” varies, as do limits on a guardian’s authority and numerous other factors. Sorting through the details is sufficiently complicated that it would be a good idea to consult with special needs attorneys from each state involved to make the transfer as smooth as possible.

When transferring a guardianship between states, it is important to determine whether the states have adopted the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). To date, 42 states, Puerto Rico, and Washington, D.C. have enacted the statute (click here for an up-to-date tally). Jurisdictions that have adopted this act will generally recognize the legal findings and guardianship orders issued by other states that have adopted UAGPPJA. The act includes a number of safeguards to ensure that when a person under guardianship moves between states, the move is made for appropriate reasons. In relevant part, the UAGPPJA requires that:

  • the relocation is in the best interests of the person under guardianship;
  • plans to support the person under guardianship in the new home are “reasonable and sufficient”;
  • no parties oppose the move; and
  • the relocation is permanent.

Under UAGPPJA, the guardian requests permission from courts in both the originating and new home states to begin proceedings, and the back-and-forth process becomes largely clerical, streamlining the process. There are exceptions, though. The use of different legal terms by the states involved can slow operations, but veteran attorneys can usually plow through the semantics. And sometimes, jurisdictions retain the right to add steps. When my home state of Hawaii adopted UAGPPJA, the legislature gave courts the discretion to hold evidentiary hearings.

In instances where both states have not approved reciprocity, complications can multiply. Guardians may need to petition the court in the originating state to allow the transfer to take place and may have to start guardianship proceedings from scratch in the new state. Fees could mount for attorneys, medical experts, and others, and the new court may ultimately disagree with previous findings. In the meantime, guardians must continue submitting reports and accountings to the first state. I know of a situation in which the process took two years and involved considerable expense.

The Special Needs Alliance (SNA), with highly experienced member attorneys in most states, is an excellent resource if you’re considering a relocation. SNA attorneys can advise you concerning not only the requirements for transferring guardianship, but also regarding differences in public programs and the availability of local services. If you’re thinking of moving across state lines, it’s best to begin planning as early as possible.

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. The views expressed in the blog are those of the author.

Insuring the Future of The Arc

Have you ever considered the possibility of making a more significant donation to The Arc?  For many families and supporters this probably sounds impossible, but it may be easier than you think.

When we were young and concerned about an uncertain future, many of us bought life insurance as a hedge against a situation that could devastate our young family.  Life insurance was a tool that provided financial security for our loved ones’ future.

As time passed and we built a ‘nest egg’, we find that the importance of that life insurance shrinks.  The kids grow up and become independent, we build a retirement plan and some of us may have invested in real estate and/or financial investments that provide security for our remaining years.  Even if we have a family member with a disability, many of us created a special needs trust to ensure they are cared for without it affecting other financial needs that our families have.  Therefore, the life insurance policies that were paid for over many years can now serve as a great way to give a gift of value that may not be needed by your family.

Please take a few moments to think about whether you too might be able to make a gift of a life insurance policy to The Arc.  It’s an easy gift to make; it simply requires adding a beneficiary or changing the ownership on an existing policy.  If the policy is already paid up, there would be no additional cost for making a very special gift that will benefit future generations of people with disabilities and their families who will continue to be served by The Arc.  To discuss a gift of life insurance or another special gift, please contact Bob Bennett, Director of Major Gifts & Planned Giving at (202) 600-3495 or by email: bennett@thearc.org.


From Small Towns to the White House – The Arc’s Interns Perspective on Celebrating 25 Years of the ADA

By Taylor Woodard and Mike Nagel

UnknownJuly 26, 2015 will mark the 25th anniversary of an important, but too often overlooked, moment in civil rights history: the signing of the Americans with Disabilities Act (ADA). The Arc’s Paul Marchand public policy interns, Taylor Woodard from Junction, Texas and Mike Nagel from Wyndmere, North Dakota, both of whom ventured into the nation’s capital determined to change disability policy, had front-row seats to the White House’s official ADA commemoration. Here is a description of that historical occasion though their eyes.

We were in awe as we were escorted through the halls of the epicenter of U.S. government by various members of the Armed Forces. Once at the celebration, we excitedly wandered through elegant corridors and ornate rooms, nibbled hors d’oeuvres, and mingled with disability community leaders and advocates as we waited for the President’s remarks. Photos and videos do not do justice to the elegance of this magnificent building.

After we had soaked in the scenery for a bit, we made our way to the East Room, where the main event was to be held. We were fortunate to snag front-row seats to hear President Obama’s address. From here, we could see so many prominent figures of the disability rights movement: former Senators Tom Harkin and Bob Dole, former Congressman Tony Coelho, as well as Representative Steny Hoyer, House Minority Whip. Finally, the big moment arrived: President Obama, followed by Vice President Joe Biden, stepped up to the podium and began.

With great passion, the President spoke of “tear[ing] down barriers externally, but…also…internally.”   He continued, proclaiming “That’s our responsibility as Americans and it’s our responsibility as fellow human beings.” For young advocates like us, the President’s words certainly ring true: attitudes in society can be, and often are, barriers in and of themselves. And we, as well as all advocates, must remember these truths as we strive for a more inclusive tomorrow.

In closing, President Obama poignantly outlined the accomplishments of the past 25 years as well as laid a path for the future. For us, this future would include ending unnecessary restraint and seclusion, assuring a high-quality education for all, creating supports and services for people with I/DD to live and work in the community, and protecting rights to self-determination and quality of life.

As the crowd applauded, a very different cheer erupted several thousand miles away in two of the nation’s tiniest rural communities, as our proud parents watched their son and daughter shake the hand of the President, a moment we will never forget.

On Mother’s Day – A Conversation with Mom and Board Member of The Arc, Kelly Piacenti

Kelly Piacenti with son and daughterKelly Piacenti is a mom to four – Allie, Olivia, Nick, and Frankie. Kelly is the Assistant Vice President, MetLife Center for Special Needs Planning, and a member of The Arc’s national board of directors. This Mother’s Day, we caught up with Kelly about what being a mom of a child with significant disabilities means to her, and how The Arc is a part of her life.

How did you and your family get to know The Arc?

Back in college, I worked in a group home in Massachusetts. I was going to school to become a social worker, and for four years I worked with people with intellectual and developmental disabilities. I used to take those individuals to activities run by The Arc. So I knew about The Arc long before I had Nick.

When Nick was born, they told us to expect him to live a few months. Then they said to set our sights on 2. On January 7th, my Nick turned 14. He has defied the experts.

In my line of work, I travel all over the country and I get to see what chapters of The Arc are doing. Most recently, I visited The Arc of Hawaii and The Arc of Anchorage.

What does it mean to be a mom of a child with very significant disability?

I thought I had it all before Nick – two kids, a house, both my husband and I had great careers – but Nick really put life into perspective. For a while, you feel like everything is falling apart – but then we woke up, and realized what Nick gives us.

Nick’s smile means a whole lot more than many people’s words. He gives us the ability to focus in on what’s important. I just want all my kids to be happy and I want to provide them a good quality of life. The things I worried about before – spills on the rug, getting someone to soccer on time – I don’t worry about now. Nick has taught me more than I’ve taught anyone else as a mom.

As a member of The Arc’s national board, I’m all about the people with I/DD and the families that don’t feel like they have a voice. There’s a core group that just need support – information, a way to talk to each other, a connection.

My family is very fortunate. I’m there on the board to advocate for people like Nick that don’t have the resources, time, or energy to fight for what they need. Before Nick came into our lives, I didn’t have this in me – Nick gave me this ability, this drive.

What type of support do you receive from The Arc and from others in your family and community?

I’m a member of my local chapter, The Arc Morris in Morris Plains, New Jersey. I’m involved because I get so much information from The Arc locally and nationally. Nick doesn’t get services from my chapter – he may never – but it’s valuable to my family because of the depth and breadth of knowledge within The Arc’s network. I read The Arc’s website because I know it’s a fantastic source of information on all kinds of topics out there. I respond to their Action Alerts because while Nick may not be receiving the services in jeopardy now, he may down the line.

When families of children with significant disabilities call me, they crave information. I tell them The Arc’s website is the place to go.

What support would you like to receive that you aren’t receiving — how can we at The Arc do better to include people with the most significant disabilities and their moms and families in our work and our lives?

I talk to a lot of families with family members with significant disabilities in my role with The Arc and my career at MetLife. Many of them discount organizations like The Arc because they don’t utilize the services they provide. But they also need information, and a connection – and The Arc provides that.

I think we need an online place to communicate – a blog or forum where families can talk to each other. For those of us who are parents of children with significant disabilities, it’s all about the quality of life and seeing what’s out there. We need to connect and we can lean on The Arc’s expertise. From The Arc, I follow what’s going on with states setting up ABLE accounts, where there could be sibling group opportunities for my other kids – it’s about seeing what’s out there for us.

The Arc can and should capture the interest and engagement of all families. Do we know who is on our site at 2am looking for information, but may not be connected to a chapter? We don’t – and we should be reaching those people and engaging them.

I think all families can get involved with our advocacy work. Our Action Center is full of information to educate yourself about the policy issues that impact all people with I/DD. It’s just a matter of making those connections to these silent families.

The Best Part of Your Day

By Shanell Mouland, Blogger at GoTeamKate.com

KateIf our Kate was to sit quietly beside me on any given day you might never know she was different.  Her eyes are impossibly blue and her blonde hair is cut just above her chin with bangs framing her angelic face.  She is tall for her age; almost four.  For all intents and purposes she could, potentially, appear ‘normal’ if there is such a thing.

If you look closer you will see she that her blonde hair is wild about her head for lack of brushing, because brushing hurts and she wears a well-worn bright red Teenage Mutant Ninja Turtles t-shirt, because change is hard.  In her mouth is a chewy tube that helps her regulate a need to chew and in her tiny hand is Master Splinter, the Sensei of the aforementioned turtles.

She is likely up on her toes, bouncing or spinning.  If she is happy her arms are flapping. She is usually happy. The idea of her sitting quietly is almost humorous to us now.

She may be repeating a comforting phrase.  She has acquired much language even if she cannot always use it properly.

“Wet’s do dis.” (Let’s do this) A phrase she’s pulled from her turtle show, no doubt.

Kate has autism and she’ll be the best part of your day.

Grace, our eldest daughter (5) and Kate’s best friend will often have one hand at the ready, for when Kate sees fit to take off.  She is young and quick and can often capture her sister before me.  You’ll see this scenario play out whenever we are in public.  I’ve often said the four words Grace utters most in public are:  “Mama, she’s getting away!”

My husband and I make every effort to do things as a family.  If we feel Kate will be overwhelmed we obviously give her a pass and she can spend some down time with her grandparents, however, if we feel Kate will enjoy any given excursion, look out, because she is coming.

Our family loves a certain Japanese restaurant in our city.  Do I call ahead and warn them we are coming? No.  Do I announce on social media that we will be there in case someone was planning a quiet dinner?  No.  We attend the restaurant with our family just like you would.

Yes, Kate will most likely not sit in her seat.  She will probably visit most tables in the restaurant anxious to show off her turtle figure.  She will explore the textures of the seats and the tablecloths and the curtains.  She will protest loudly when she is not allowed in the kitchen.  She will make sure each patron eating dinner that evening is fully aware of her presence.  She will call the women, Mama and the men, Daddy and she will hug more than a few.

In our experience, most people will smile broadly and engage our little social butterfly.  Some will shoot us that ‘how dare you bring a child to a restaurant like this’ look and some will stare at us with pity.

As we enjoy our Sushi and Tempura and some great conversation with the folks at table five about autism and our family, the woman at table nine purses her lips and sips her wine annoyed that mid-miso soup she was privy to Kate yelling to the chef clear from our table:  “Dat your hat, daddy?  I have dat hat?”  Her husband seems oblivious to her annoyance and taps on his phone while murdering his teriyaki.

Table five dissolves into laughter at Kate’s cute request for the chef’s hat.  They order more wine and ask Kate which turtle is her favorite.

Table nine gets up and leaves.  They pay their check with a disapproving glance from the Mrs. towards us.

Honestly, who brings someone like that woman out to a public restaurant where a family is trying to enjoy a meal, anyway?

And then I hear:  “Mama, she’s getting away!”


Shanell Mouland is a mother, teacher and writer from New Brunswick, Canada. When she isn’t advocating for the rights of individuals with autism she is writing a children’s book called: Sunny and Sinclair. She is actively seeking a publisher because the three full time jobs mentioned earlier take a lot of time away from important things like coffee drinking and relaxing. She can be reached through her website: goteamkate.com.

Learn more about The Arc’s activities for Developmental Disabilities Awareness Month at www.thearc.org/lets-go-out, and join our March 29 event on Facebook.

It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

Sexual Abuse of People with I/DD a Global Scandal

By Theresa Fears, MSW. Theresa has been working in the field of sexual abuse prevention of people with intellectual and developmental disabilities for 13 years. She created the Partnership 4 Safety program at The Arc of Spokane. The Arc has recently launched a National Center on Criminal Justice and Disability to address some of the issues highlighted by Theresa and provide resources for people with I/DD who are in contact with the criminal justice system.

rate of sexual abuse graphicSexual abuse of people with intellectual and developmental disabilities (I/DD) is a huge problem.

Children and teens with I/DD are three to four times more likely to be sexually abused than are those without disabilities. Some researchers estimate that the lifetime rate of abuse of adults with disabilities is as high as 90 percent.

Childhood sexual assault has lifelong consequences. Childhood sexual assault has been connected to depression, posttraumatic stress disorder and an increased risk of sexual abuse in adulthood.

Adult victims of sexual assault may experience the trauma of not being believed or of being blamed for the attack and risking displacement from their homes or residences. Sadly, many victims do not receive therapy to help deal with the trauma of an attack. In a recent study, only 33 percent of victims received therapy after their sexual assaults. There are many false beliefs about those who offend. The most common is that they are strangers, but according to a number of authors, between 97 percent and 99 percent of assaults were committed by someone the victim already knew. Approximately 44 percent of the perpetrators were connected because of the victim’s disability. Perpetrators may include special education teachers, bus drivers, caregivers and other support personnel.

Research on risk factors for sexual assault of people with I/DD has been consistent over the last 20 years. The frequently reported risk factors are:

  • Lack of education about sexual development  and anatomy
  • Lack of information on abuse awareness
  • Lack of healthy relationship education
  • Lack of social norm education
  • Lack of age-appropriate friends

If sexual assault is a problem, then what is the solution? Prevention! There are three levels of prevention according to the Centers for Disease Control (CDC), primary, secondary and tertiary. Primary prevention takes place before harm has occurred; its purpose is to stop sexual abuse from happening.

Secondary prevention happens immediately after abuse has occurred; its purpose is to prevent it from happening again. And lastly, tertiary prevention is a response to the harm of sexual abuse — generally therapy.

The CDC has recommendations for creating prevention programming based on years of evaluating what works and what doesn’t.

Providing prevention programming across the lifespan would require offering education to parents of people with I/DD and, children, teens and adults with I/DD.

The logical place to begin primary prevention therefore is with the caregivers of young children — the parents.

A solid parent education program should have three goals:

  • To  increase parents’ understating of  the rates of abuse and risk factors
  • To explain parental obligation to support children’s development as sexual beings and
  • To teach parents how to identify and challenge inappropriate or dangerous behaviors of any adult in a child’s life.

How can you begin a prevention program at your agency? First, look to the programs you already have for a natural fit. It would be easier to add sexual abuse prevention training to a parent education, information, support and advocacy program than it would to an employment program for example.

A good free parent education program is the “Where We Live” curriculum created by Pittsburg Action Against Rape (www.pcar.org/special-initiative). Although it is not written for children with I/DD, it can be easily modified. I would be happy to share this information with Apostrophe readers who are interested in beginning parent education in their community.



This article first appeared in the Winter 2013 issue of Apostrophe Magazine (October-December).