As Budget Cuts Loom, No One's in Charge of Special Education

Christina Samuels, who writes the "On Special Education" blog for Education Week, continues her good reporting on issues related to students with disabilities. Today she asks, "When Will We Have a New Federal Special Education Chief? (And Why It Matters)." Interestingly, she points out that four assistant secretaries for the Office of Special Education and Rehabilitative Services (OSERS) have been appointed during a president's first term. Those four were nominated during April to June and confirmed as early as June and as late as October.

The advocates who Christina has interviewed aren't concerned about the non-political staff who are involved in special education policy and operations. But with a proposed increase in defense spending and likely cuts in other areas, this vacancy could put special education programs in jeopardy. Katherine Beh Neas, vice president for government relations for Easterseals, told Samuels, "If you don't have a political person in place advocating for the political part of the functions of that department, it leaves the department at risk."

Read the EdWeek article, which also addresses potentially harmful changes to the Every Student Succeeds Act (ESSA). And take a look at Christina's blog, On Special Education.

The Trump Era: What It Means for People with Disabilities, and What You Can Do

If you or someone you know has a disability and are looking for encouraging words about the election of Donald Trump, you won't find it here. But it's important to evaluate the potential impact of a Trump presidency, understand how you can be involved, and how to move forward.

Where We Are Today

I started this blog in 2008 to advocate for people with disabilities during a presidential campaign that I knew would have a major impact. Looking back, there's no doubt that our choice of President Obama led to eight years of progress. Here are just a few examples:

• Health care reform that provided coverage for millions of people, prevented insurance companies from denying coverage for pre-existing conditions, and removed lifetime caps on coverage.
• Advocated for rights. The Obama Administration strongly advocated for the rights of all citizens. The Department of Justice and Department of Education issued a letter to schools telling them not to tolerate bullying -- including bullying against the 6.5 million students with disabilities.
• Signed the Workforce Innovation and Opportunity Act, pushing the Department of Labor, Department of Education, and other agencies to advance employment opportunities for individuals with disabilities.
• Launched the "Curb Cuts to the Middle Class" initiative focused on hiring people with disabilities to prepare to qualify for jobs with federal contractors and giving those employers tools to recruit and promote them.
• Signed the United Nations Convention on the Rights of Persons with Disabilities, the first new human rights treaty of the 21st century.

Many of my friends and/or Facebook friends have children with disabilities but don't appreciate the advances that have been made under President Obama. People complain about the health system, and there's certainly room for improvement, but if you have a child with a disability or chronic condition, you should cherish and fight to protect the Affordable Care Act. One way or another, changes will be made (and need to be made), but the fundamental principles -- 1) the right to health care, 2) the right to coverage for people with pre-existing conditions, and 3) the ban on lifetime caps -- must be preserved.

The Impact of a Trump Presidency

There is much fear and speculation about what Trump will do as president, but the first place to look is his stated priorities:

• Repeal the Affordable Care Act. (Something the Republican-led Congress also wants to do.)
• Reverse the expansion of Medicaid. About 10 million people on Medicaid have disabilities, representing 15 percent, and it covers not just health care, but home health aides and other critical services. If Trump repeals the ACA and turns Medicaid into a block grant program, as many as 30 million people could lose their insurance.

There is also concern that Trump will soften enforcement of the Americans with Disabilities Act, by shifting the priorities of the Department of Justice's civil rights division and other agencies. See "Disability Rights Advocates are Terrified of a Donald Trump White House" from the Huffington Post.

I don't have a crystal ball, but several patterns are emerging:

• President-elect Trump, the "outsider," is filling his transition team with "insiders." Many of them come from the Heritage Foundation, which advocate for traditional conservative positions like cutting taxes on wealthy people and corporations, repealing the Affordable Care Act, and reforming Social Security and Medicaid in ways that would negatively affect families. If you wonder how much the Heritage Foundation cares about families like yours, consider that they strongly advocated AGAINST signing the Convention on the Rights of Persons with Disabilities.
• The people he is putting on his transition team gives you a good idea of the kind of people who he will appoint to his Cabinet. Remember, many experienced, admired Republican policy experts and government officials have distanced themselves from Trump, so he will have a hard time finding qualified people for many positions. Most will argue for less government "interference," which families like ours may call "protection" for those who most need it. For example, Ben Carson, who's been mentioned as a potential secretary of education or HHS, has said that disability issues can be better managed by "businesses, industry, Wall Street, churches, and community groups." I don't know about you, but I'm not counting on Wall Street to ensure my child's education rights and health care.
• Trump's statements and behavior on the campaign trail have created more division than unity. Now that he's been elected, he's paying lip service to bringing America together, but everything he's said and done so far has had the opposite effect. His campaign has empowered bigots, racists, anti-Semites, and misogynists -- which is even more apparent now that he's been elected. Discrimination is likely to increase, and we can only hope that Trump will enforce existing laws and not weaken them. Let's just say that people with disabilities are not and will not be a high priority among his various constituencies.

What You Can Do

1. Advocate for People with Disabilities

Here are just a few organizations that will busy fighting for your rights, services, and programs in the next four years. Don't just visit these websites. Sign up for their newsletters, register for advocacy alerts, follow them on Facebook and Twitter. When issues come up, be ready to learn about them and take action.

• Here are Autism Speaks' legislative priorities. Join Autism Votes to get involved in your state.
• See Easter Seals' priorities and sign up for their Legislative Action Network.
• Follow The Arc's Action Center to keep up with issues that affect you. Sign up for alerts.
• Post a comment or email me to suggest other resources, and I'll add them here.

2. Focus on Your Family and Loved Ones

The night Donald Trump was elected president, I was in the hospital with my daughter, during an almost two-week stay. I was disappointed -- devastated -- by the results, but it wasn't the most important thing to me at the time. Do what you can do for the people closest to you. Being a good parent, spouse, and caregiver is one of the most important things you can do, no matter what else is going on in the world. Love and support the people who need you, and take care of yourself.

3. Be Nice

This may seem trite, but as much as we complain about Trump's behavior, comments, and actions, all we can control is how we act ourselves. Set an example for your children, neighbors, and colleagues by treating people with respect, tolerating different views, and trying to understand where people are coming from. We are not as divided as much as a 50-50 election may suggest. Let's focus on what we have in common, what we can do for others, and fight for what we believe in.

Do You Have a Plan? Resources for Voters with Disabilities

Easter Seals, one of the leading national advocacy organizations for people with disabilities, has prepared a helpful checklist to ensure that all eligible voters can vote. The organization has partnered with the American Association of People with Disabilities (AAPD) on a campaign called REV UP to ensure that Americans with disabilities can fully participate in the political process. The campaign is about much more than a a presidential election every four years -- "REV UP" stands for "Register, Educate, Vote, and Use Your Power."

Read and print the one-page checklist here, and download a voting resource card with important phone numbers. You'll also find tips for finding your polling place and making arrangements for curbside voting, mobile voting at long-term care facilities, and getting transportation on election day -- as well as specific links for topics including deaf and hard of hearing, blind or low vision, mobility, and intellectual and developmental disabilities. Read more.

Additional resources:

• "10 Tips for Voters with Disabilities" from the U.S. Election Assistance Commission
• The Arc's "Know Your Rights" toolkit
• "ADA Checklist for Polling Places" from the Civil Rights Division of the U.S. Department of Justice
• "A Guide to the Voting Rights of People with Mental Disabilities," a new guide from the Bazelon Center for Mental Health Law

Disability Policy and the Election: A Wrap-Up

Still trying to decide who to vote for? Want to easily share a summary of the top issues to people with disabilities? Review this blog's most popular posts this election season:

Easter Seals on Campaign Issues: Exclusive Interview. The head government relations official at Easter Seals on the record of the Obama Administration, health care reform, special education, and key differences between the candidates' positions.

Thank You, Ann Coulter! A response to Coulter's offensive use of the "r-word."

Ayn Rand and Disabilities: Part 1 and Part 2. Why author Ayn Rand is relevant to this year's election, and her shocking disdain for people with disabilities.

Advocates Agree: Health Care Law is Good for People With Disabilities

Will Romney Cut Funds for Autism Program He Supported in Massachusetts?

Ryan Budget: "Dangerous to People with Disabilities"

Romney's Voucher Plan: "Disaster for Special Education Students" and Vouchers: What Would They Mean for Special Education?

Advocates Agree: Health Care Law is Good for People with Disabilities

No presidential election comes down to one issue, but you could argue that the choice between President Obama and Governor Romney comes down to two -- the economy and health care. Obama supporters will tell you that the president inherited a big mess, and the economy is showing signs of improvement as a result of his actions. Romney supporters will say we're on the wrong path and need a business leader like Romney to set a new direction.

For health care, Obama supporters will tell you that health care reform is a major success because it guarantees coverage that can't be taken away, even for people with pre-existing conditions. Romney, on the other hand, has vowed to repeal the Affordable Care Act on his first day in office.

While others will debate those topics, my focus is whether the president's version of health care reform helps or hurts people with disabilities. The consistency of views among major disability organizations is revealing. As nonprofits, these groups do not endorse candidates, but listen to what they had to say when the Supreme Court upheld major portions of the legislation in June 2012. (Links are to more complete statements.)

“People with disabilities and their families have their lives dictated by the status of their health insurance. The Supreme Court’s ruling today tells these families they can make decisions about what is best for them as a family, and not be controlled by fear of losing health insurance coverage.” --Katy Neas, senior vice president of government relations at Easter Seals

“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act.  Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long." --Marty Ford, director of public policy, The Arc

“Today’s court decision will ensure that health insurance companies cannot deny coverage based on preexisting conditions or discriminate based on an individual’s health status. This is the essence of why the disability community supported the ACA and we are thrilled that the Supreme Court decision protects these reforms that are at the heart of health reform efforts.” --Donna Meltzer, Chair, Consortium for Citizens with Disabilities

“This decision is a victory for all Americans. It means parents of a child with cancer won’t face bankruptcy paying for his treatments because of the insurance company’s lifetime cap. It means a woman with Multiple Sclerosis will receive the same health coverage as her colleagues who do not have a pre-existing condition. It means more people with disabilities will be able to live full lives in our communities rather than nursing homes.” --Mark Perriello, President and CEO, American Association of People with Disabilities

 "For millions of Americans with disabilities who rely on home and community-based services to live, learn, and earn in America, the ruling today by the Supreme Court on the Affordable Care Act is arguably the most significant decision since passage of the Americans with Disabilities Act 22 years ago.” --Jonathan Young, chair of the National Council on Disability

For more information:
"Top Reasons Why The Arc Supports the Affordable Care Act"
"Health Care Ruling A Win, Disability Advocates Say," by Michelle Diament of Disability Scoop.

Easter Seals on Campaign Issues: Exclusive Interview

I'd like to thank Katherine (Katy) Beh Neas, senior vice president for government relations at Easter Seals, for taking the time to talk with me about critical disability issues as we approach the 2012 presidential election. Katy has been focused on these issues since the late 1980s, when she worked in the Senate on legislation including the Americans with Disabilities Act and the Individuals with Disabilities Education Act. In her current role, she monitors and analyzes federal legislation and regulations affecting children with disabilities and their families, particularly in the areas of autism, early intervention, early childhood education, special education and budget and appropriations.

We discussed the record of the Obama Administration, health care reform, special education, and key differences between the candidates' positions.

Q: When you consider the issues that are important to people with disabilities, how would you assess the commitment and the actions of the Obama Administration? What has been done well, and what requires more attention?

A: First, what's been done well: Easter Seals launched a major initiative in 2011 – Make the First Five Count – to reduce the number of young children who enter kindergarten with a disability or developmental delay that hasn’t been identified or addressed. Our research shows that approximately 1 million kids fall into this category. An element of the MFFC campaign is advocacy to increase funding for the federal early intervention program, Part C of the Individuals with Disabilities Education Act. President Obama’s budgets have called for increases in Part C over the past two years. We are very pleased with his leadership in this area. In addition, the President has championed health care for people with disabilities in the Affordable Care Act, Medicaid and Medicare.

What needs more attention? Easter Seals was disappointed that the Administration is not working on implementation of the CLASS Act – the Community Living Assistance Services and Supports Act – this policy was adopted as part of the Affordable Care Act and would establish a voluntary long-term care assistance policy.

Q: The Easter Seals strongly supported the Supreme Court's decision to uphold the major portions of the Affordable Care Act. How could the ACA be strengthened to meet the needs of people with disabilities. What are the biggest benefits?

A: While there are many benefits within the ACA, some of the insurance market reforms are truly transformational. The elimination of pre-existing condition exclusions for kids and extending coverage to dependent children are huge first steps. Families with kids with disabilities no longer have to worry about whether their child will be dropped from coverage because of a chronic condition or disability. We are also working to shape how the rehabilitation and habilitation benefits are designed so that people with disabilities of all ages can get the appropriate habilitation services that can help a child gain a skill he or she never had or help an adult slow down the regression of a disability. The bulk of the ACA comes online in 2014. Our hope is that the law stands and that states will continue to work to meet this important deadline.

Q: Governor Romney has vowed to repeal the ACA on his first day in office, if he's elected. Would that have any immediate impact on families living with disabilities?

A: Prior to the enactment of the ACA, most people with disabilities were unable to buy health insurance on their own. Pre-existing condition exclusions made it virtually impossible for children or adults with disabilities to get coverage outside of an employer provided plan or outside of a government program like Medicaid. For many, Medicaid eligibility requires the individual to have an extremely low income. The ACA changed all of that, and today, no child with a disability can be dropped from coverage because of a pre-existing condition. For this reason alone, Easter Seals opposes repeal of the ACA.

Q: You've helped lead the Consortium for Citizens with Disabilities since its founding. Has health care reform been a contentious issue among the 50 organizations that are part of that consortium? What principles do they agree on, and where has there been debate?

A: I’ve been a member of the Consortium for Citizens with Disabilities for 21 years, and chair its Education Task Force. My colleagues at Easter Seals have been very involved in the CCD Health, Long Term Services Supports, Employment and Training and other Task Forces. This coalition has a solid track record of working across disparate groups to find areas of agreement. I believe that there was very strong support for health reform among the majority of groups. I have attached a copy of the CCD principles on health reform as well as Easter Seals’ principles.

Q: In all the talk about health care reform and Medicaid, the topic of education seems to be a much lower priority. Yet for students with disabilities, services funded by the Individuals with Disabilities Act are a daily need. What do you think of the Romney-Ryan proposal to privatize special education funding?

A: Funding for special education services is always a hot topic. The Individuals with Disabilities Education Act (IDEA) is a civil rights law that requires states to provide a free, appropriate public education to each child with a disability regardless of the nature or severity of the disability. Congress also provides billions of dollars each year to states to help them meet their obligation. The law currently provides the rights to a child to have his or her special education needs met at no cost to his or her family. Easter Seals believes that funding for quality early education and care services is the best way to decrease special education funding. We know that when kids get their special needs addressed before they enter kindergarten, they need less special education services. Our goal should be to focus on what works – to ensure that every child has a chance to succeed and with that success comes a more productive and independent life.

Q: For my readers who are studying the records and platforms of the presidential candidates, what would you say are the biggest differences between the candidates' philosophies and policies as they affect disability issues?

A: The treatment of Medicaid is among the biggest difference between President Obama and Governor Romney. President Obama is working to protect access to appropriate services to children with disabilities and long term services to adults with disabilities that are currently available under the Medicaid program. Governor Romney’s platform proposes to alter the Medicaid program from one that guarantees specific services to one that is a block grant to states that eliminates any guarantees.

Q: Is there any other information you think families should have as they prepare to vote this year?

A: This election is really important. Elected officials at all levels of government will make decisions that affect the lives of children and adults with disabilities and their families. I would urge all of your readers to educate themselves about the positions of the candidates and then vote. Elected officials need to know how their priorities either support or hinder the quality of life of children and adults with disabilities. It’s up to all of us to educate them.

If you want to learn more about these issues, Katy recommends "Principles for Health Care Reform from a Disability Perspective," prepared for the Consortium for Citizens with Disabilities, and the Easter Seals' principles for health care reform.

Visit the Easter Seals website, learn about the Make the First Five Count initiative, or read Katy's bio.