Every March we celebrate Developmental Disabilities Awareness Month and the many contributions people with developmental disabilities (DD) make to our society. This year, the National Association of Councils on Developmental Disabilities, Association of University Centers on Disabilities, and National Disability Rights Network chose the theme “Side by Side” to highlight the principle that everyone benefits when people with and without disabilities live, learn, and earn “side by side” in the community.

This idea of true inclusion and integration is the backbone of our work at ACL, and we are proud to work with our DD network partners to make it a reality for all people.

However, it is not only people with and without disabilities who are stronger working side by side. This simple, yet powerful idea also applies to all of us working within the disability community. Historically, we have often worked within our individual spheres. DD advocates all knew each other and worked together, the independent living community did the same, and so forth. We were each doing great work, and we occasionally came together to accomplish great things such as the passage of the Americans with Disabilities Act, but we also missed some opportunities to achieve more by working together.

Fortunately, that is starting to change, and I can tell you that we are stronger as a result.

Last year, following the transfer of the TBI programs from the Health Resources and Services Administration to ACL and passage of the Workforce Innovation and Opportunities Act, which transferred several disability programs from the Department of Education to our family, ACL created the Administration on Disabilities (AoD). AoD brought together—for the first time—federal DD, independent living, and other disability programs. While we are still learning about each other’s work, we’ve already begun benefitting from our collective knowledge.

And the same thing is happening in the states. Earlier this month, I visited Sacramento, CA where I saw many examples of the power and potential of collaboration within the disability network.

With funding from an AIDD Partnerships in Employment Systems Change Grant, the California Employment Consortium for Youth and Young Adults with Intellectual and Developmental Disabilities (CECY) is bringing together more than 45 representatives from 23 state agencies, centers, and organizations along with families and self-advocates to increase the number of youth with DD in integrated competitive employment. Together they are working to tackle bureaucratic barriers and create innovative new models.

At the DD Public Policy Conference hosted by the California chapters of The Arc and United Cerebral Palsy, I led a panel that included Disability Rights California, three University Centers on DD, the California Foundation for Independent Living Centers, and California’s independent living and DD councils. Each of these programs have their own unique histories, models, and culture, yet as they spoke the connections between their programs became clear and the opportunities for collaboration seemed endless.

I also met directors from two independent living centers who are working closely with colleagues in the aging network. A majority of the people served by both centers are older adults, and the centers are working with the aging network to connect those people with services such as home modifications and meals.

Of course, bringing together aging and disability work is the reason ACL was created. Together, the disability and aging communities have a larger voice and more influence. We can be more successful advocates, more easily share expertise across our networks, and bring the partners we work with, at all levels, together.

We also benefit from collaboration beyond the aging and disability spheres by advocating for each other’s issues, building genuine coalitions across movements, and having each other’s backs. One person who is living out this principle is Frances Gracechild. Over 35 years at Sacramento’s Resources for Independent Living (RIL) she has worked in coalition with everyone from faith leaders, to labor unions, to anti-poverty groups to advance common goals.

And there are always new frontiers for collaboration. For example, the UC Davis MIND Institute is helping the next generation of doctors become better allies to people with DD with a month-long training module introducing fourth year medical students to the experiences of people with disabilities, disability culture, and community-based services and supports.

Of course, collaboration doesn’t mean we lose the unique elements of our individual missions. At ACL, we really are a multicultural organization. There are a lot of commonalities between the needs of older adults, people with intellectual and developmental disabilities, and people with physical and sensory disabilities. So it’s important that we all develop a better understanding of each other’s programs and issues so we can look for opportunities to work together where it makes sense. But it is just as important that we preserve, and continue to develop, the deep specific expertise we brought to the table as separate organizations.

That multicultural mindset reminds us of the critical importance of cultural and linguistic competency. Here again, our state network partners are leading the way. Disability Rights California is undertaking organization-wide efforts to include people with DD from underrepresented communities. This includes dedicated staff responsible for outreach to underserved communities, comparing client and staff demographics to Census figures, and advocacy to ensure individuals receive notices and programs plans in their native languages.

Whether working across movements or across generations, listening is essential to a “side by side” approach. Barbara Wheeler of the University of Southern California UCEDD shared an example of the dangers of not listening when organizing youth with disabilities. She notes that within the disability community, youth and adults often prioritize issues differently. Youth-organizing initiatives can falter when youth are expected to mobilize around the priorities of the adult organizers and not the issues that matter most in their own lives.

These are just a few examples of some of the great work happening in just one state and I could tell many more stories of the “side by side” approach in action all over the country.

Working side by side, across differences, won’t always be easy. It can take energy, time, and resources. And even with the best of intentions, not every attempt will lead to a resounding success.

But overall, we are strongest when we find alternatives to segregation, break down silos, and abandon our single-issue boxes.

All month, #SideBySideDD16 has been highlighting stories of people with and without disabilities side by side in the community.

Today the Centers for Disease Control and Prevention (CDC) released data from its Autism and Developmental Disabilities Monitoring Network indicating that 1 in 68 school-aged children are on the autism spectrum. In announcing the rate, which is unchanged from 2014, the CDC called attention to the critical role services and supports play in helping people with autism reach their full potential.

Autistic children, like people with all types of disabilities, need more avenues to gain independence. From an early age, they need to learn life skills that will enable them to fully participate in the community and to be actively and meaningfully involved in planning for their own transition to adulthood.

We need to have higher expectations for people with disabilities, in everything including academic achievement. We must empower them to do more than stay at home or work in non-integrated settings, like sheltered workshops. We also must take action to structure our communities and workplaces to embrace neurodiversity and benefit from these individuals’ strengths.

To achieve this, we must ensure services are available to support children with autism through all stages of life—from early childhood and the school years, as they look toward college and employment, and ultimately as they live independently as adults.

To that end, the nation’s 67 federally-funded University Centers for Developmental Disabilities (UCEDDs) are playing a leading role in conducting research, developing and testing cutting edge practices, and connecting families with services and supports.

For example, the University of Wisconsin-Madison’s Waisman Center demonstrates the effectiveness of starting early and establishing high expectations for all children. Its supportive learning environment for a developmentally diverse group of children between the ages of 1 and 5 offers a model of promising practices for other schools and organizations.

UCEDDs also have been key partners in the CDC’s Learn the Signs. Act Early. campaign, which aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need.

State Councils on Developmental Disabilities also are playing a role. Many participate in Project SEARCH, a program which uses real-life work experience to help youth with disabilities make successful transitions from school to adult life with jobs in integrated settings with good wages. State Protection and Advocacy systems often work with children with autism and their families on the development of—and adherence to—appropriate Individual Education Plans.

The CDC report also notes that black and Hispanic children are less likely to be identified as being on the autism spectrum, and they receive developmental evaluations at a later age than white children. This is a serious problem because a late or missed diagnosis can cause children and their families to miss out on services and supports that can help them thrive.

Although there is no single definitive explanation for the disparity in diagnoses, there are a number of factors that research suggests might play a role.

• Black and Latino children on the autism spectrum are more likely to receive incorrect diagnoses such as ADHD or conduct disorders. Signs that black and Latino children may be on the autism spectrum are often dismissed and attributed to other social or cultural factors or other disabilities.

• Black and Latino families may not have the same level of access to health care services, particularly specialized services.

• Linguistic barriers can impact families for whom English is not a first language. For example, a study in California found that only 10% of surveyed primary care pediatricians could provide Spanish-language Autism screenings.

• Particularly in black communities, a lack of trust in the medical profession because of historic abuses like the Tuskegee experiments, may cause parents to avoid seeking a diagnosis or treatment.

• Greater stigma associated with developmental disabilities in black and Hispanic communities also may play a role in preventing parents from seeking assessments for their children.

And there may be other factors at play. Consequently, there is no single answer to the problem. However, there are efforts underway to help. For example, Birth to 5: Watch Me Thrive!, a coordinated federal effort to encourage universal developmental and behavioral screening for children, includes a number of Spanish-language screening tools.

Additionally, 43 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs operate across the country, often working alongside a UCEDD. These programs, funded by the Health Resources and Services Administration, train professionals from diverse disciplines to diagnose autism and other developmental disabilities and use evidence-based interventions. Many of these programs have focused specifically on outreach to underserved communities.

Multiple projects at the University of Illinois at Chicago (UIC) also are focusing on outreach, working with the Hispanic community. The UIC UCEDD runs a clinic offering comprehensive interdisciplinary assessments in Spanish and/or English for individuals of all ages who believe they may have a developmental disability. One of the program’s specialties is autism. In addition, through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research at ACL, UIC is evaluating a training program for Latino parents of children with autism delivered by health educators, or promotoras, who themselves are parents of children with autism.

Such programs are necessary because research suggests that racial disparities impact families’ experiences long after a diagnosis is made. For example, a national study (PDF) found that black and Latino parents of children with developmental disabilities such as autism "were significantly less likely than white parents to report that their health care provider spent enough time with their child, or was sensitive to the family’s values and customs." For families for whom English is not a first language, language barriers can result in inaccessible services and make it even harder to navigate a system of services and supports that can be overwhelming for any family.

Given the many challenges, it is critical that cultural and linguistic competency be a part of every program and system that supports people on the autism spectrum and their families.

Recent efforts to address this challenge include the Diversity and Inclusion Toolkit developed by the Association of University Centers on Disability with guidance and funding from AIDD, to highlight specific strategies and resources that UCEDDs, national organizations and federal agencies can use to promote diversity and inclusion. In addition, with National Training Initiative grants from ACL/AIDD, 14 UCEDDs are developing diversity fellowship programs to support recruitment and retention of diverse trainees and build cultural and linguistic competence within their centers.

Tomorrow marks the start of Autism Awareness Month. This year—and going forward even after the month ends—let’s focus on more than awareness. Let’s work toward true acceptance. Let’s raise expectations, both for people with autism and for the world we live in.

We all benefit when everyone has the opportunity to contribute and participate—let’s commit to working even harder to ensure that opportunity fully includes people with autism.

Adam’s* Decision

In 2012, “Adam” (not his real name) was fighting an infection in his leg and facing a tough situation.

The Protection and Advocacy Agency (P&A) in his state became involved when the state’s Attorney General’s office called. The Attorney General’s office told P&A staff that an individual with an intellectual/developmental disability—Adam—urgently needed surgery to save his life. They believed Adam’s disability was keeping him from making an informed decision about the procedure. They were considering seeking an emergency order to allow the surgery, and wanted to know if the P&A would represent Adam’s interests if such a court procedure became necessary.

P&A staff went to the hospital and met privately with Adam for about two hours. They discussed his thoughts about the surgery. Adam was able to describe the difficult situation he was in. He knew he had two options: 1) get the surgery and lose his leg; or 2) refuse the surgery and likely die from the infection he already had. He also told staff that he was fearful that the surgery might just be a continuation of the significant surgical interventions he had endured in the recent past, that recovery might be painful, and that he might not have a longer or happier life following surgery.

Once he had a chance to tell his story, a meeting was set up with the surgeon so Adam could ask questions about the surgery. The surgeon talked with Adam about his fears and gave him examples of patients in a similar situation who were better able to recover once the infected limb had been removed. After Adam had his questions answered and heard the surgeon’s opinion, he immediately replied in a clear and firm voice “When can we start?”

P&A staff called the Attorney General’s office to inform them that they had visited with Adam and had determined that, in their judgment, he currently had the ability to make an informed decision and had decided to pursue surgery after considering his options. Ultimately, the Attorney General’s office respected Adam’s decision and chose not to pursue an emergency order.

Alternatives to Guardianship

As National Developmental Disability Awareness Month comes to a close we need to keep in mind people across the country like “Adam” who are fighting to make their own decisions about how they live their lives – decisions about their living situations, their medical care, their work, and their social lives.

Too often, people assume that guardianship is the best way to protect a person with a disability whom they love or provide services for. However, people with intellectual and developmental disabilities will tell you that protection is not what they need. What’s needed is support in making their own decisions.

Guardianship is a status created by law that allows one person to make some or all decisions on behalf of another person. When the court appoints a guardian for someone, that person loses their legal independence and the right to have the final say in decisions affecting their life. It takes away a person’s most basic rights, including the right to make decisions about one’s own medical treatment, finances, and living arrangements. It may even take away the right to marry and have children. In addition, guardianship, which is created through legal proceedings, is usually more expensive and more permanent than other options. Less restrictive options that place the person with a disability at the center of their own decision making should be a first step before using a more drastic legal proceeding that may strip of a person of their freedom of choice and their rights.

There are many alternatives to guardianship that can preserve a person’s independence and allow them to participate more fully in making their own choices, practicing self-determination and participating in the community. Compared to guardianship, these alternatives are easier to change as needed, may be less expensive and allow individuals to make their own decisions whenever possible.

Appointing an alternative or representative payee, someone appointed to handle benefit payments on behalf of the recipient, can also provide support in keeping track of finances. If a person’s needs change, a power of attorney or medical power of attorney are also viable options that are less restrictive than guardianship. And sometimes a person may simply need a little extra support in one area. For example, automatic bill payment automatically pays recurring expenses from a person’s accounts, reducing or eliminating the need for ongoing assistance with paying bills on a monthly basis.

Supported Decision-Making

Supported decision-making is a process where individuals with an intellectual or developmental disability make their own choices and express their preferences with assistance. Supported decision-making happens when a family member or other designated person or people explain issues in a manner that the individual with a disability can understand—similar to what happened in Adam’s example. The individual with the disability is the decision maker with the right support and accommodations. Supports vary based on the needs of the person.

AIDD, and our network of Protection and Advocacy Agencies, Developmental Disabilities Councils, and University Centers for Excellence in Developmental Disabilities, are taking the lead from the community and exploring ways to expand supported decision-making and alternatives to guardianship to maximize the opportunity for people with intellectual disabilities to live independently and to exert control and choice in their own lives. We plan to help advance supported decision-making as a tool for facilitating the choices of the people we serve and empowering their rights.

We can all learn from Jenny Hatch, a young woman with Down Syndrome, who won the right to make her own choices with supports and accommodations. Jenny was placed under temporary guardianship against her will. She was moved into a group home and placed in a sheltered workshop, isolating her from friends and community. She successfully challenged the guardianship in court and now lives a fulfilling life with friends, a job, and a home of her choosing.

We need to change the approach from assigning someone to make decisions for the person with an intellectual or developmental disability to one that preserves the rights of people with disabilities and gives them support in making their own decisions when that’s needed. Together we can provide opportunities for others to follow the examples of “Adam” and Jenny to make their own life choices.

Guardianship should be viewed as a last resort. Supported decision-making is one alternative that allows people with intellectual and developmental disabilities to take control of their own lives. In the words of Jenny Hatch herself, “Just because people have a disability does not mean they need a guardianship. Many times they may just need a little help.”

As in Adam’s story, it is important to remember that, even if a person has a different way of communicating, he or she still has valid opinions about how he or she wants to live, and always has the most at stake in in any decision about their life. We need to take the time to ask questions and communicate with our loved ones to help determine what allows that person to thrive. With appropriate support, people with intellectual and developmental disabilities can maintain their independence and live dignified, productive lives.

*not his real name

For many years, state courts have routinely assigned guardians to people with intellectual and developmental disabilities as they became adults. Older adults with dementia-related disorders also frequently have been assigned guardians.

The trouble with guardianship is that it is a legal process. A court deems a person incapacitated or legally incompetent and assigns a substitute decision-maker for that person. Guardianship laws vary by state, but in some states, guardians are given the authority to make all financial, legal, and personal decisions on behalf of another person. Essentially, the person can lose ALL of his or her rights to independence, autonomy, and decision-making.

This approach assumes that people with disabilities and older adults are incapable of making decisions. That is simply not the case.

The goal of the Administration for Community Living is to maximize the independence and well-being of older adults and people with disabilities. We are proud to be a leader in exploring alternatives to guardianship. We believe supported decision-making poses the most promising and flexible model.

Supported decision-making starts with the assumption that people with intellectual and developmental disabilities and older adults with cognitive impairment should retain choice and control over all the decisions in their lives. It is not a program. Rather, it is a process of working with the person to identify where help is needed and devising an approach for providing that help. Different people need help with different types of decisions. For some, it might be financial or health care decisions. Others may need help with decisions surrounding reproductive rights or voting. Some may need help with many types of decisions, while others need help with only one or two. 

The solutions also are different for each person. Some people need one-on-one support and discussion about the issue at hand. For others, a team approach works best. Some people may benefit from situations being explained pictorially. With Supported decision-making the possibilities are endless.

The key is that the process is centered on the person to whom the decisions apply, and it enables the person to make decisions based on his or her wants and preferences. Supported decision-making keeps control in the hands of the individual, while providing assistance in specific ways and in specific situations that are useful to the person.

We know on a case-by-case basis and anecdotally that supported decision-making works, and it appears to have the potential to provide a significant improvement to current guardianship arrangements. However, it has not been formally tested, which can make it difficult for states to adopt the practice.

To address that challenge, the Administration on Intellectual and Developmental Disabilities and the Administration on Aging, two program components of the Administration for Community Living, jointly awarded a cooperative agreement to Quality Trust for Individuals with Disabilities to build a national training, technical assistance, and resource center to explore and develop supported decision-making as an alternative to guardianship. The resource center will gather and disseminate data on the various ways in which supported decision-making is being implemented and generate research in the area. Our goal is that the information collected during the period of this cooperative agreement will lead to a model that will help states as they consider alternatives to guardianship.

We are excited by the possibilities this work may generate. It is another step toward ensuring all people are treated with dignity and respect throughout their lives. It is another step toward a vision for the future that includes a collective recognition that the right to self-determination and independence are fundamental for everyone. And ultimately, it offers the promise of new opportunities for people with disabilities and older adults to live and thrive in the communities of their choice.

Update: A Message from Commissioner Bishop

February 13, 2015

Thank you to all our readers who joined this discussion and shared their personal perspectives. The range and diversity of stories, experiences, and responses shows there is no one-size-fits-all solution to this important issue. Many of the concerns shared here highlight exactly the sort of questions that the National Resource Center for Supported Decision Making seeks to explore.

As Deputy Assistant Secretary Walker and I noted in our blog, when it comes to supported decision-making, no two situations are exactly alike. The Administration for Community Living (ACL) recognizes that people with disabilities and older Americans sometimes experience challenges in understanding and communicating their preferences and needs—and, as your stories illustrate, family members and caregivers often play a critical role in ensuring that those preferences are honored and needs are met. Your stories also demonstrate the dangers that can arise when guardianship is viewed as the default option for those who only need support with making a few decisions.

ACL promotes the concept of supported decision-making not because it is the only option, but because it offers flexibility to provide as much assistance as needed—including total assistance, when that is appropriate—while also ensuring that the right to self-determination is preserved for each individual.

We thank you again for your contributions to this important discussion and hope you will keep the comments coming. The feedback you provide will help us think about, and talk about, this issue more clearly going forward

Twenty-four years ago, the Americans with Disabilities Act (ADA) was signed into law. The law’s passage signaled America’s commitment to achieving equality for all its citizens by providing long overdue protections for people with disabilities. We have made tremendous progress toward this goal, but we have yet to reach the point at which every person can realize the fundamental rights, protections, and freedoms afforded to each of us by the United States Constitution.

The Administration for Community Living (ACL) continues to build on the legacy of the ADA and related legislation with initiatives designed to ensure persons with disabilities achieve full integration and inclusion in every aspect of American life. Our focus is on creating communities where every American has the opportunity to lead a rich, rewarding, and meaningful life.

Voting: One of the fundamental rights all Americans enjoy is the right to vote. But rights mean little without the ability to exercise them. The ACL is helping to make this fundamental right accessible to Americans by awarding Help American Vote Act grants to states so they can improve accessibility to voting places and while also ensuring that protection and advocacy agencies can provide legal protections for persons with disabilities.

Employment: Every American deserves the opportunity to find meaningful work. On February 12, 2014, President Obama formally signed an executive order making it illegal for companies providing services to the federal government to pay people with disabilities less than minimum wage. This is an important achievement, but it is only a first step. This week President Obama signed the Workforce Innovation and Opportunity Act. This job-training bill brings the National Institute on Disability, Independent Living, and Rehabilitation Research, the State Independent Living Councils and Centers for Independent Living, and the Assistive Technology program to ACL. These additions will enhance our ability to provide cross- disability programming and meaningful employment opportunities for people with disabilities.

Support for Families: Families are at the core of providing long-term services and supports to people with disabilities and older Americans. Of the more than 4.7 million American citizens with intellectual or developmental disabilities, 75 percent live in their communities without any formal disability services. They rely on their families for varying levels of support (more than a quarter of the people providing support are over 60 years of age). Millions of working families are providing unpaid care to their loved ones and sometimes to multiple generations of loved ones, simultaneously. We have made investments through the Supporting Families project and are planning new investments intended to inform the design, implementation, and continuous improvement of federal and state policies and programs related to helping people with disabilities and their family caregivers.

Nonetheless, sometimes when we try to envision a future that offers greater inclusion of people with disabilities, it can be difficult to recognize the subtle challenges that will arise over time. Independence to Inclusion, a documentary video produced by the Minnesota Governor’s Council on Developmental Disabilities and Twin Cities Public Television, offers a moving depiction of this. As the documentary illustrates, we need to be careful to ensure that when we design systems for people with disabilities and families, we do not make assumptions about what is best for people and inadvertently create new barriers to full inclusion. This documentary provides context to the phrase “nothing about us without us.” It reinforces the principles embodied in the Developmental Disabilities Act “to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs.”

That is why, as we celebrate the remarkable progress made under the ADA, I ask you to join me in committing to something more. Let us combine the insight and experience of the past 24 years with a renewed sense of urgency to create a culture in which all Americans can live with independence and dignity, while also enjoying the full range of opportunities that this great nation has to offer.

About the Administration for Community Living (ACL) and the Administration for Intellection and Developmental Disabilities (AIDD): Operating within the ACL, AIDD provides financial and leadership support to organizations in every state and territory in the United States. This mission of the AIDD is to ensure that individuals with developmental disabilities and their families can fully participate in and contribute to all aspects of community life.

As we head into a weekend of events celebrating the 25th anniversary of the signing of the Americans with Disabilities Act, the Administration on Intellectual and Developmental Disabilities (AIDD) is releasing a final rule (PDF) that will strengthen critical programs that promote the independence, inclusion, and civil rights of Americans with developmental disabilities and their families.

The rule provides additional guidance for implementing the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). It accounts for the many changes included in the 2000 DD Act reauthorization and addresses some of the most common barriers and road blocks DD Act programs face in seeking to translate Congress’ charge into programs that have a real impact. With these issues clarified, DD Act programs can devote less time and money to understanding and defending what the law allows them to do and devote more resources to supporting people with developmental disabilities and their families. 



From smartphones and electronic medical records to new laws and attitudes, the world we live in has changed drastically since the last DD Act rule was released. And who knows what new changes the coming decades will bring?

In developing this rule, we paid close attention to the feedback we received from the DD network and the community it serves. For example, we have heard from University Centers of Excellence in Developmental Disabilities (UCEDDs) concerned that a lack of clarity in the requirements for how they are structured could lead to their funding and functions being split up, which would hurt their effectiveness. And Protection and Advocacy systems investigating suspected abuse and neglect have shared stories of being forced to wage costly court battles in order to access records, despite the clear mandate of authority included in the current DD Act.

 Here are just a few of the notable provisions of the rule:

• The rule explains how and when a P&A should have access to service providers, individuals, and records (including electronic communication and records) when investigated cases of suspected abuse.
• It clarifies the DD Act's requirement that UCEDDs be single interdisciplinary units within their respective university systems.
• Recognizing that Demonstration Projects conducted by State Councils on Developmental Disabilities are intended “to demonstrate new approaches,” the rule sets limits on the duration of these projects while building in some flexibility and outlining when projects can exceed these limits.
• The final rule provides updated definitions for DD Act programs. For example, a flexible definition of “service provider” recognizes that how and where people with developmental disabilities receive services is constantly changing.

We look forward to working with all stakeholders to make sure that those affected by the final rule have the tools they need to ensure a smooth implementation. Over the coming weeks we will be hosting a series of webinars for grantees.

For the disability community, this is a weekend to celebrate hard-earned gains and examine the hard work that remains. Sunday, July 26, marks the 25th anniversary of a historic milestone, the signing of the ADA. The ADA provides, to quote the law itself, “a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities” and a recognition that “physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society.”

The DD Act and the ADA represent two tremendous pieces of legislation that have helped move this country forward. Because of the efforts of the disability rights movement, people living with disabilities lead very different lives than they did in 1963, when the DD Act was first signed into law. At that time, many people with developmental disabilities spent most of their lives in institutions where reports of systemic abuse and neglect were common.

Today, they have far more opportunities to live, learn, and work in the community of their choice. Because of the ADA, they have protection from discrimination on the basis of disability and a more accessible world that includes accessible buses, curb cuts, braille signs, and relay services. And because of the DD Act, they can receive a broad range of state-of-the-art educational and medical services from UCEDDs or participate in an employment or a self-advocacy leadership program funded by a DD Council. And if they do encounter discrimination or abuse, P&As are available in every state and territory to help.

There is still much work left to be done, but we are proud of all the DD Act network has accomplished to support and empower the nearly 5 million people living with developmental disabilities in this country and their families. With this rule, the DD Act network will be in an even stronger position to continue leading the way towards a brighter, and more inclusive, future.

View the full rule on the Federal Register website (PDF) and check out the DD Act Rule Toolkit for more on the rule and the DD Act network.

Every 48 seconds in the U.S., someone becomes paralyzed due to a spinal cord injury. The majority of these injuries are caused by auto accidents, on-the-job incidents, and sports.

In July of this year, the U.S. Senate designated September 2014 as National Spinal Cord Injury Awareness Month. The Senate praised the dedication of those working to improve the quality of life of people living with paralysis and their families. Lawmakers also challenged researchers to find better treatments and therapies, launch new clinical trials, and ultimately develop a cure for paralysis.

Although the official observance is drawing to a close, the important work it aimed to spotlight continues. At the Administration for Community Living, we are excited by a new role we will play in these efforts. Beginning this year, ACL is continuing the federal government’s support to the Paralysis Resource Center, a public-private partnership housed within the Christopher and Dana Reeve Foundation.

The mission of the Paralysis Resource Center is to "promote the health and well-being of people living with spinal cord injury, mobility impairment, and paralysis." That fits perfectly with ACL’s mission to provide avenues that enable people with disabilities and older adults and to live independently in the communities of their choice.

According to the Christopher and Dana Reeve Foundation, Americans of all ages living with paralysis often are needlessly institutionalized when they should be living in their own homes. We can do better. We have to do better. Not only is independence important for quality of life and a basic human right, it also ultimately is less expensive for the long-term services and supports system. There is no downside to Community Living.

The Paralysis Resource Center supports this goal by providing comprehensive information for people of all ages living with paralysis and their families. Resources on spinal cord injury, paralysis and mobility-related disabilities, including information and referral by phone and email, are available in several languages including English and Spanish.

The Paralysis Resource Center also offers a variety of services and programs such as a peer and family support mentoring program, a military and veterans program, multicultural outreach services, information specialist services in multiple languages, a lending library, and quality-of-life grants.

Working together, the Administration for Community Living and the Paralysis Resource Center will help ensure people living with paralysis – and people with all types of disabilities – have the support they need to live independently in their communities.

Learn more about the Paralysis Resource Center here. More information about ACL grants and grants and programs can be found here.

March 31, 2016 by Aaron Bishop, Commissioner, Administration on Disabilities

Today the Centers for Disease Control and Prevention (CDC) released data* from its Autism and Developmental Disabilities Monitoring Network indicating that 1 in 68 school-aged children are on the autism spectrum. In announcing the rate, which is unchanged from 2014, the CDC called attention to the critical role services and supports play in helping people with autism reach their full potential.

<*editor's note: the link is no longer available. For the latest data on this subject, visit https://www.cdc.gov/ncbddd/autism/data.html>

Autistic children, like people with all types of disabilities, need more avenues to gain independence. From an early age, they need to learn life skills that will enable them to fully participate in the community and to be actively and meaningfully involved in planning for their own transition to adulthood.

We need to have higher expectations for people with disabilities, in everything including academic achievement. We must empower them to do more than stay at home or work in non-integrated settings, like sheltered workshops. We also must take action to structure our communities and workplaces to embrace neurodiversity and benefit from these individuals’ strengths.

To achieve this, we must ensure services are available to support children with autism through all stages of life—from early childhood and the school years, as they look toward college and employment, and ultimately as they live independently as adults.

To that end, the nation’s 67 federally-funded University Centers for Developmental Disabilities (UCEDDs) are playing a leading role in conducting research, developing and testing cutting edge practices, and connecting families with services and supports.

For example, the University of Wisconsin-Madison’s Waisman Center demonstrates the effectiveness of starting early and establishing high expectations for all children. Its supportive learning environment for a developmentally diverse group of children between the ages of 1 and 5 offers a model of promising practices for other schools and organizations.

UCEDDs also have been key partners in the CDC’s Learn the Signs. Act Early. campaign, which aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need.

State Councils on Developmental Disabilities also are playing a role. Many participate in Project SEARCH, a program which uses real-life work experience to help youth with disabilities make successful transitions from school to adult life with jobs in integrated settings with good wages. State Protection and Advocacy systems often work with children with autism and their families on the development of — and adherence to — appropriate Individual Education Plans.

The CDC report also notes that black and Hispanic children are less likely to be identified as being on the autism spectrum, and they receive developmental evaluations at a later age than white children. This is a serious problem because a late or missed diagnosis can cause children and their families to miss out on services and supports that can help them thrive.

Although there is no single definitive explanation for the disparity in diagnoses, there are a number of factors that research suggests might play a role.

• Black and Latino children on the autism spectrum are more likely to receive incorrect diagnoses such as ADHD or conduct disorders. Signs that black and Latino children may be on the autism spectrum are often dismissed and attributed to other social or cultural factors or other disabilities.

• Black and Latino families may not have the same level of access to health care services, particularly specialized services.

• Linguistic barriers can impact families for whom English is not a first language. For example, a study in California found that only 10% of surveyed primary care pediatricians could provide Spanish-language Autism screenings.

• Particularly in black communities, a lack of trust in the medical profession because of historic abuses like the Tuskegee experiments, may cause parents to avoid seeking a diagnosis or treatment.

• Greater stigma associated with developmental disabilities in black and Hispanic communities also may play a role in preventing parents from seeking assessments for their children.

And there may be other factors at play. Consequently, there is no single answer to the problem. However, there are efforts underway to help. For example, Birth to 5: Watch Me Thrive!, a coordinated federal effort to encourage universal developmental and behavioral screening for children, includes a number of Spanish-language screening tools.

Additionally, 43 Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs operate across the country, often working alongside a UCEDD. These programs, funded by the Health Resources and Services Administration, train professionals from diverse disciplines to diagnose autism and other developmental disabilities and use evidence-based interventions. Many of these programs have focused specifically on outreach to underserved communities.

Multiple projects at the University of Illinois at Chicago (UIC) also are focusing on outreach, working with the Hispanic community. The UIC UCEDD runs a clinic offering comprehensive interdisciplinary assessments in Spanish and/or English for individuals of all ages who believe they may have a developmental disability. One of the program’s specialties is autism. In addition, through a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research at ACL, UIC is evaluating a training program for Latino parents of children with autism delivered by health educators, or promotoras, who themselves are parents of children with autism.

Such programs are necessary because research suggests that racial disparities impact families’ experiences long after a diagnosis is made. For example, a national study (PDF) found that black and Latino parents of children with developmental disabilities such as autism "were significantly less likely than white parents to report that their health care provider spent enough time with their child, or was sensitive to the family’s values and customs." For families for whom English is not a first language, language barriers can result in inaccessible services and make it even harder to navigate a system of services and supports that can be overwhelming for any family.

Given the many challenges, it is critical that cultural and linguistic competency be a part of every program and system that supports people on the autism spectrum and their families.

Recent efforts to address this challenge include the Diversity and Inclusion Toolkit developed by the Association of University Centers on Disability with guidance and funding from AIDD, to highlight specific strategies and resources that UCEDDs, national organizations and federal agencies can use to promote diversity and inclusion. In addition, with National Training Initiative grants from ACL/AIDD, 14 UCEDDs are developing diversity fellowship programs to support recruitment and retention of diverse trainees and build cultural and linguistic competence within their centers.

Tomorrow marks the start of Autism Awareness Month. This year—and going forward even after the month ends—let’s focus on more than awareness. Let’s work toward true acceptance. Let’s raise expectations, both for people with autism and for the world we live in.

We all benefit when everyone has the opportunity to contribute and participate—let’s commit to working even harder to ensure that opportunity fully includes people with autism.