Individuals with disabilities focus of partnerships

By Todd Cohen

RALEIGH, N.C. — Five days a week this school year, seven young people from all seven public high schools in Durham who have completed their high school course work are interning at Duke Regional Hospital, rotating through departments to develop skills to prepare them for local jobs.

The students all have intellectual and developmental disabilities and spent most of their school career separated from most other students, learning in classrooms for those with “individual education plans.”

They are are among 70 who are interning at nine sites, primarily hospitals, throughout North Carolina through Project SEARCH, a model launched in 1996 at Cincinnati Children’s Hospital Medical Center.

Funding several of the North Carolina programs has been the North Carolina Council on Developmental Disabilities.

The Council, a stand-alone state agency that reports to the state secretary of health and human services and is mandated and funded by the federal government, works to give people with disabilities and their families access to — and a voice in shaping — services and supports they need.

Employment is critical for individuals with disabilities, says Chris Egan, the Council’s executive director.

“It means you’re working, and work is a huge outcome for most everyone in our society — to work, earn, contribute and get paid,” he says. “It leads not only to doing the job but to asset development, and engagement with people who become friends. And for people with disabilities, it demonstrates their contribution and potential, and their individuality.”

About 80 percent of individuals with developmental disabilities in the U.S. are unemployed, he says. In North Carolina, about 185,000 to 200,000 individuals, or about 1.5 percent to two percent of the population, live with developmental disabilities.

And they face continuing challenges, including low expectations, stereotyping and isolation, Egan says.

“If you have a disability, you’re often not considered capable, and society’s expectations tend to be low,” resulting in “fewer choices and fewer opportunities to contribute to your community, even when you want to and could,” he says.

Historically, he says, stereotyping resulted in the segregation and separation of individuals with disabilities in school, the workplace and the community.

Operating with an annual budget of $1.9 million and a staff of 10 people, the Council invests 70 percent of its funding in about 20 initiatives that focus on improving services and connectedness for individuals with developmental disabilities and their families.

A new five-year plan the Council is developing focuses on boosting its constituents’ financial security and community living, and their participation in advocacy work.

Project SEARCH, for example, aims to help students with disabilities make the transition from school to work, combining classroom instruction, career exploration and job‐skills training through internships.

The collaboration taps the resources of schools, businesses, community workforce agencies and the state Division of Vocational Rehabilitation Services.

The Council is working with Wake Technical Community College, Community Workforce Solutions, the state Division of Vocational Rehabilitation Services, Alliance Behavioral Health and NC Works to expand the program to young adults with disabilities in Wake County starting in August.

To help improve community living, the Council is working with Easter Seals UCP of North Carolina and Virginia, and with The Arc of North Carolina, to find a way to integrate and better coordinate access to health and wellness services for individuals with developmental disabilities.

For about 20 years, it also has funded Partners in Policymaking, a program that each year provides about 25 individuals with developmental disabilities and family members with a day-and-a-half of training a month to help build their leadership skills so they can be effective advocates for services they need.

And it is working with Benchmarks, a Raleigh-based alliance of agencies that serve children, adults and families, to organize a state chapter of the National Association of Direct Support Professionals.

Direct support professionals provide services that are indispensable in the daily lives of individuals with developmental disabilities, yet they are among the lowest paid in the health-care field, Egan says.

Ultimately, he says, the Council aims to help ensure that individuals with development disabilities lead full and fulfilling lives.

“A disability is a natural part of human condition,” he says, “and a label doesn’t define a person and what they’re capable of.”

Insurance to cover autism therapy

By Todd Cohen

RALEIGH, N.C. — For over seven years, advocates for people living with autism worked to persuade state lawmakers to require health insurance plans to cover treatment for autism, an incurable brain disorder that affects 65,000 North Carolinians.

Starting July 1, 2016, as the result of a law enacted this year by the legislature and signed by Gov. Pat McCrory, autism insurance will be available to eligible individuals through age 18. The State Health Plan for state employees already covers autism.

Working like typical health insurance, autism insurance will cover medically necessary treatments such as occupational, speech and physical therapy, as well as psychiatric, psychological and pharmacy care.

Under a key section of the law that autism advocates favored and insurers supported once limits were set on coverage, eligible individuals will get an annual benefit up to $40,000 to cover “adaptive behavioral treatment.”

Advocates say the legislation, already on the books in some form in 42 other states, represents a breakthrough for families in North Carolina living with autism.

Autism typically makes it difficult for an individual to understand verbal or nonverbal signals and cues, or connect in appropriate ways with family members, caregivers, coworkers and others, or to function in settings like a house, office, store or public transportation.

That disconnection can make it a struggle to handle even basic tasks like bathing or eating a meal, or to cope with everyday occurrences at home or work such as a simple disagreement or change in plans.

Behavior therapy has shown success in helping individuals with autism communicate and cope more effectively with the people, places and situations they see and experience every day.

The new law and the insurance coverage it requires will make that behavior therapy available to more North Carolinians, advocates say. Large group insurance plans the law will affect cover 600,000 individuals. Costs will vary by insurer, and co-payments are expected to total $4,000 to $6,000 a year.

“Autism doesn’t differ from other non-curable chronic medical conditions that have been covered traditionally by health insurance,” says Tracey Sheriff, CEO of the Autism Society of North Carolina.

“We’ve got many families in North Carolina paying health insurance premiums, but their children have been excluded from treatments their physicians deem medically necessary,” he says.

Aleck Myers, a psychologist and clinical director at the Autism Society, says therapy helps families living with autism manage the condition and ease its emotional, personal and financial toll.

Autism can be expensive. With traditional treatment, the lifetime cost of managing the condition for just one individual typically can total $3 million to $5 million, Sheriff says.

But intensive one-on-one behavioral therapy, 10 hours to 40 hours a week, particularly for young children, Myers says, can help lower the lifetime cost by as much as $1.6 million.

In May, the Autism Society launched intensive behavior-therapy pilot programs in Raleigh and Charlotte that already serve about 20 individuals, including adults.

“It’s medically necessary to teach adaptive therapy,” Myers says. “This type of therapy is absolutely essential for people with autism.”

Ipas champions reproductive health, rights

By Todd Cohen

CHAPEL HILL, N.C. — In 1973, the U.S. Senate approved an amendment to the Foreign Assistance Act that was sponsored by the late Sen. Jesse Helms of North Carolina and barred the use of U.S. foreign aid to support abortion services abroad, even in countries in which abortion was legal.

Passage of the Helms amendment ended support by the U.S. Agency for International Development to develop a technology known as “manual vacuum aspiration,” or MVA, a hand-held instrument designed for simple and safe use in uterine evacuation.

So a group of researchers and others associated with the University of North Carolina at Chapel Hill created International Pregnancy Advisory Services, a nonprofit now known as Ipas, to raise private funds to complete development of the technology and distribute it.

Ipas, with a startup staff of about five people, began manufacturing the instrument at a plant in Carrboro, and in its early years distributed about 25,000 devices a year, while also funding free-standing abortion and family planning clinics in 11 countries, mainly in Latin America and Asia.

This year, as it celebrates its 40th anniversary, Ipas operates with an annual budget of $60 million, mostly from U.S. foundations and six European governments, and a staff of over 370 people, including 142 at its headquarters in Chapel Hill and the remainder at offices in 14 countries, mainly in Africa and Asia plus a few in Latin America.

And while it continues to support the manufacture and distribution of the MVA instrument, including 200,000 in 2012, Ipas provides a broad range of programs, support and advocacy in the area of women’s health.

“Our unique mission is to reduce maternal deaths and injuries due to unsafe abortions, and to increase women’s ability to exercise their sexual and reproductive rights, with a special focus on the right to safe abortion,” says Liz Maguire, president and CEO of Ipas.

Despite significant progress over the past 40 years, accomplishing that mission faces big obstacles, including continuing stigma about and growing restrictions on abortions in the U.S. and some other countries, says Maguire, who previously served as director of the Office of Population and Reproductive Health for USAID in Washington, D.C.

Every year, over 21 million women throughout the world undergo an unsafe abortion because they lack access to safe care, Maguire says, while 47,000 women a year die from unsafe abortions and over 5 million women a year are injured so seriously from unsafe abortions that they require hospitalization, with over 91 percent of those deaths and injuries occurring in Africa and South Central  Asia.

“The women who suffer the most tend to be the most disadvantaged, including women who are poor, or live in rural areas and lack access to services, or young women who may lack information about services, Maguire says.

“There should be no unsafe abortions,” she says. “It’s a simple, safe procedure when done by a trained provider under good conditions.”

Ipas trains and equips health care providers, and provides assistance to health care systems. It works to ensure ready access to medical equipment and drugs needed for safe abortion care, and to make sure women have community-based access to information and care.

It also works with local partners and supports local efforts to ease restrictive laws and policies. It conducts research and evaluation to support changes in programs and policies. And it works with local and regional partners, and has a special focus on the needs of women under age 25.

Despite progress and in the face of severe restrictions that continue to affect millions of women, Maguire says, Ipas is working as part of a global movement to “ensure that abortion is legal and safe and accessible and affordable for  all women, not just women who have the means to access safe care.”

Ipas also is working to eliminate the stigma around abortion,  to end gender inequality and sexual violence, and to push for continuing policy reform.

“Women have the right to safe abortions, to determine their reproductive futures, but in too many cases women can’t exercise fully their rights,” Maguire says. “No women should have to suffer or die because of an unwanted pregnancy and an unsafe abortion.”

Conservation Network stepping up advocacy role

By Todd Cohen

RALEIGH, N.C. — Last year, The Colbert Report on Comedy Central lampooned a bill introduced by a North Carolina state lawmaker to bar the state Coastal Resources Commission from defining rates of sea-level changes for regulatory purposes.

“The bill as originally introduced was written in a way that seemed to indicate the legislature was mandating that the oceans not rise,” says Brian Buzby, executive director of the North Carolina Conservation Network. “They scaled back the bill, but they essentially put their heads in the sand.”

The bill, and the national publicity, helped drive a surge in the number of citizens who subscribe to a weekly email public alert from Conservation Network to 25,000 from 14,000, and in the number of its Facebook friends to 10,000 from 4,000.

Now, seeing serious threats to the environment and to environmental policy in the areas of air quality and energy, water quality and quantity, and land conservation and open space, the Conservation Network is expanding its staff to strengthen its community organizing and communications.

A growing number of policy decisions “are taking the last three to four decades of a very balanced approach of environmental protection and economic development,” Buzby says, “and throwing that out the window.”

Formed in 1998 and operating with an annual budget of $800,000 and a staff of eight people, the Conservation Network serves nearly 100 affiliate environmental groups throughout the state.

It communicates with its member groups every day by email, phone or in person, distributes a weekly email message to its 25,000 activist subscribers on a current topic they can act on, and posts daily Facebook updates on campaigns it is waging on issues, inviting people to get involved.

The Network’s use of social media includes raising awareness about new studies and breaking news about the environment, as well as celebrating North Carolina’s environment.

The organization generates 40 percent of its revenue through contributions, 31 percent from grants, 12 percent from contracts, 9 percent from affiliate dues, 6 percent from an online auction, and 2 percent from investment interest and miscellaneous sources.

The auction, which raised $20,000 last fall, has grown by inviting affiliates and activists to donate items, such as the use of their beach houses or their business services, an approach that Buzby says not only generates more revenue but helps the Network better engage and know its supporters.

And with the environment facing critical challenges, Buzby says, the role of advocacy has becoming increasingly important.

A report last year by the N.C. Sustainable Energy Association estimated, conservatively, that the state is home to over 15,200 clean energy jobs at 1,100 companies in 86 of the state’s 100 counties and that those companies generate over $3.7 billion in annual revenues, he says.

“North Carolina has had a long history of working hard and working together to balance environmental protection with a strong economy, and creating a state where businesses want to come and people want to move, because it has a reputation of a strong education system, good jobs and a clean environment,” he says.

“But what we’re seeing in the past few years, and it seems to be accelerating, is that we are moving back to the old paradigm of jobs versus the environment,” he says. “And that’s really not how the world works.”

Nonprofits urged to speak up on policy issues

By Todd Cohen

RALEIGH, N.C. — To be effective in helping to shape public policies on a broad range that affect them and their constituents, nonprofits need to do a better job framing their positions from the perspective of the Republicans who now control the governor’s office and a so-called “super majority” in the state legislature.

That was the advice of two policy experts who spoke to nonprofit leaders at a policy briefing in Raleigh sponsored by the Triangle Community Foundation and N.C. Center for Nonprofits.

Nonprofits need to learn to communicate more effectively with lawmakers and other government officials in Raleigh, David Heinen, director of public policy and advocacy for the Center for Nonprofits, told 140 people attending the briefing.

He and Ran Coble, executive director of the N.C. Center for Public Policy Research, reviewed the policy agenda likely to be addressed by Gov. Pat McCrory and state lawmakers, as well as the Obama administration and Congress.

Those policies involve issues that include taxes, energy, education, health care, voting laws, the state budget, and laws and regulations that affect nonprofits.

Coble said nonprofits, individually and collectively, can make a big difference by getting involved in policy discussions.

Heinen, noting they account for 1 in 9 jobs in the state, said nonprofits need to couch their policy positions in a “clear and compelling” way that shows “how they’re using taxpayer dollars” efficiently and effectively, producing “measurable results” that affect the lives of North Carolinians, and using public funds to “leverage” private support.

Because they are organizations that are trusted, he said, nonprofits also have an opportunity to get more North Carolinians engaged in voting and communicating with elected officials about a broad range of issues that affect them.

Nonprofits have been hit hard by the downturn in the economy, Heinen said.

Ninety-three percent have seen an increase in demand for services, 59 percent have not been able to meet the need for their services, and roughly a third have seen a decline in private giving for each of the last three years, he said,

Last year, he said, many nonprofits operated at a deficit, dipped into reserves, and cut staff or services.

The Center says collaboration between nonprofits and government has led to improvements in “red tape” from government grants and contracts, although nonprofits still are reporting inefficiencies in the government contracting system.

With changes in the state’s tax system expected to be a big priority for McCrory and state lawmakers, the Center for Nonprofits has taken the position that charitable nonprofits should be exempt from sales tax, a position it says is consistent with the practice in most other states.

The elimination of that exemption, he said, would cost charities $228 million a year in refunds.

The Center for Nonprofits has scheduled its 2013 Public Policy Forum and NC Nonprofits Day for February 25 and 26.

Legislative leaders and advocates will speak at the Public Policy Forum for North Carolina’s Nonprofit Sector on February 25 in the McKimmon Center, and will be briefed by the Center for Nonprofits the following morning in the Legislative Building, with the opportunity to spend the day talking with lawmakers.

‘Cliff’ crisis still seen looming for nonprofits

Legislation passed by Congress on New Year’s Day to address the so-called “fiscal cliff” crisis simply delayed the resolution of big issues that affect charities, an advocacy group says.

“Nonprofits must remain vigilant during the next couple of turbulent months and be prepared to mobilize to lift their voices to federal policymakers,” the National Council of Nonprofits says in a statement.

The law, for example, postponed for two months, until March 1, sweeping spending cuts from nearly every federally funded domestic program, cuts that “will reduce funding without reducing the underlying human needs, there by increasing demands on nonprofits in local communities while also decreasing resources for nonprofits to provide needed services,” the Council says.

Decisions on those cuts made for fiscal 2013 “will have a rippled effect on spending levels for the next decade, underscoring the urgency of this issue,” the Council says.

And while the law passed on January 1 does not significantly change the charitable deduction, the Council says, “most experts expect deductions to become featured more prominently on the chopping block in the looming debates ahead as Congress and [President Obama] look for ways to increase government revenues while addressing budget and tax reform in the coming months.

The law restores the Clinton-era limit on itemized deductions and trims the deductibility of most itemized deductions, including charitable deductions, by three percent of adjusted gross income above a specified threshold, or by 80 percent of a person’s itemized deductions, whichever is less.

The law retroactively restores the tax incentive for giving by older Americans by letting them give to charities their mandatory Individual Retirement Account distributions taken in December 2012 or January 2013, and apply the rollover their 2012 tax filing, the Council says.

It says the law also restored conservation easements retroactively and renewed them through 2013, and continues tax provisions that benefit low-income families many nonprofits serve.

The Council also says law extends for five years tax credits for college tuition and the working poor that benefits 25 million low-income families; extends for one year federal benefits to the long-term unemployed; delays cuts in reimbursements to medical personnel under Medicare; and extends funding through the fiscal year that ends September 30 for agricultural programs, including food stamps.

— Todd Cohen