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 30^th 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 (IDD) 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 IDD 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 IDD but hanging out a seat or two behind the person with IDD 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 IDD make friends, date, and live independently is growing. But, all of us can do more to make sure that people with IDD in our lives have opportunities to connect with people of all abilities.

People with IDD, 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 IDD 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 IDD in events and activities you attend.

Families and Professionals, you can:

• Encourage people you know to include people with IDD in events and activities and promote understanding by talking about the value that the people with IDD bring to your life.

• Make space and time for people with IDD 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!

By Wendy H. Sheinberg, CELA

Moving to another state is a challenge for most families. If a family member has a disability, that challenge is even greater, as it often requires figuring out how to transfer disability benefits to another state. 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 a disability, it pays to do plenty of upfront research and to construct a “safety net” to protect against unanticipated gaps in service, problems and delays.

Transferring SSI From State to State & Other Social Security Disability Benefits

If you inform the Social Security Administration of your new address early, there should be no disruption to your Supplemental Security Income (SSI) or other 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.

Medicaid Eligibility and 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 home and community-based services, and new residents must reapply and go to the end of the line.

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 Services

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.

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.

Housing Assistance

• 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

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.

Want to learn more about home and community-based services (HCBS) and how we’re working to make them easier to access? Visit our HCBS page.

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.

By Taylor Woodard and Mike Nagel. July 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 IDD 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.