Disabilities Lobbying Group Finds Trouble with (What Should Be) Its Own Constituents


January 31, 2016; Denver Post

It’s critical for nonprofits to form alliances that can influence public policy and funding, something they probably cannot do on their own. But those lobbying alliances need to remember who it is they are advocating for. That is not what is happening in Colorado.

The Denver Post reports that some $600,000 in public funds for people with developmental disabilities is going instead to a trade association that lobbies at the state capital, and which has a contentious relationship with parents of children with disabilities, who have complained for years that lobbyists get a portion of government funds earmarked for therapy, respite care, wheelchair ramps, and bathroom renovations.

The situation came to a head after a recent Denver city audit found that one of Colorado’s 20 community-centered boards, which manages federal, state and city tax dollars for the disabled, was paying its executive director $478,000, in addition to perks for other employees.

The boards are not required to publicly disclose their finances, and have consistently denied requests for financial information—this despite the fact that each board receives 82 to 94 percent of its budget from public dollars. However transparency legislation introduced this month could force the boards to open their books.

The boards’ trade association and lobbying group, Alliance Colorado, has not taken an official position on the bill, although its leadership is concerned the legislation will create time and financial burdens for the boards.

It’s common for public agencies, such as cities or community centers, to spend public dollars on lobbying, but it’s a problem when their lobbying runs counter to the interests of the people they serve, said the executive director of Colorado Common Cause: “In this case, you’ve got public resources being used to shield the people they serve from the information they want.”

The trade association works in much the same way as other service-provider agencies that lobby, “but the lobbying arm for the disability system is unique in the extent of its tumultuous relationship with families taking care of kids with disabilities,” said the Post article.

Parents have referred to the payments as a “secret fee,” and that the lobbying group is a “closed-door club” that includes just 25 of the hundreds of agencies that provide services for people with disabilities.

Alliance Colorado refused to release its annual budget or a list of membership fees it receives from its members to the Post. It has an annual budget of $667,000, of which $574,000 comes from membership dues. It reported spending $45,000 on lobbying, but the breakdown is unclear, and since lobbyists have discretion when reporting their hours, that is difficult to track.

Records obtained by the paper show at least two of the boards have spent money on their own lobbyists. Several of the boards said the cost of membership ranged from $600 to $42,909, which provides information about government policy that they could not obtain on their own.

But those with disabilities and their parents say that while the lobbying dollars would not buy a lot of services or therapy, the money spent to influence lawmakers with little input from families is a “gut punch.”

However, the Alliance’s leadership says it represents the boards who manage Medicaid funds and other benefits for people with disabilities, not the families and caregivers themselves. Using “public dollars to lobby for public dollars” is fundamentally bothersome, said the executive director of the Colorado Developmental Disabilities Council. “When cities pass levies for disability services, people assume the money will go to the cute kids pictured on campaign signs, not toward fundraising and lobbying.”

The trade association says it is common for nonprofits to belong to professional associations that lobby, although they acknowledge the trade association needs to improve its relationship and communication with people with disabilities and their families.

The organization’s main goal for years has been to eliminate or reduce waitlists for disability services. The state senator who introduced a transparency bill said she did so because she learned the majority of the community-centered boards use the same auditing firm, which did not uncover the problems uncovered by the Denver City Auditor.—Larry Kaplan

  • As someone who co-founded/directs our own family charitable trust, and as the full time volunteer CEO of http://www.RespectAbilityUSA.org, I thank you for this fantastic piece. I hope and believe that the social justice issues you raise will cause positive change. This article reminds me of the work of the late great Rick Cohen, who is sorely missed both as a person and as a voice for those who need a hand up. Thank you for filling that void with this fantastic work.

    Although Americans with disabilities are rarely mentioned in mainstream poverty discussions, they are a huge part of the poverty landscape in America, and today represent the poorest of the poor. A quick overview clearly demonstrates this situation:

    • In 2014, there were around 22.8 million adults with disabilities aged 18-64 equal to 11.6% of the working-age population.

    • Around 1 in 2 adults with disabilities are in poverty based on market income while nearly 1 in 3 are in poverty based on disposable income (i.e. when counting income cash benefits like SSDI and SSI).

    • Adults with disabilities make up 32.8% of all adults aged 18-64 in market-income poverty and 26.3% of all adults in disposable-income poverty

    • Poverty level for people with disabilities (PwDs) keeps increasing whereas it has dropped for most other groups

    • Poverty stats over time for PwDs compared to African Americans, women and/or other minorities

    • Chart of the increase in the number of PwDs over time against static employment rates

    While these statistics are disturbing enough, the wider impact is far greater as the impoverishment of people with disabilities (PwDs) spills over to their families and children as well.

    • In 2014, 17.9 million (16.9%) of nonelderly families had one or more members with disabilities.

    • The poverty rates for families with members with disabilities are similar to the poverty rates for individuals with disabilities i.e. around 1 in 2 families with a disabled member is in market-income poverty. Around 1 in 3 are in disposable-income poverty.

    • Families with a member with disabilities make up 38.3% of all families in market-income poverty and 31.2% of all families in disposable-income poverty.

    Finding ways to increase the incomes of PwDs must be a central part of any serious anti-poverty strategy. It cannot just be to raise the rates of disability payments as the government cannot afford a bigger burden in entitlements, and more specifically and importantly, the Kessler study and ours shows that 70% of working age PwDs want to work!! The BEST way to do this is to increase employment opportunities for PwDs, especially young PwD. Yet decently paid employment – the primary and irrefutably proven pathway out of poverty – still remains elusive for millions of Americans with disabilities.

    Even though 2015 marked the 25th anniversary of the Americans with Disabilities Act, today the percentage of unemployed PwDs remains exactly as it was 25 years ago: 70%. We have not advanced even one percentage point.

    However, other circumstances have significantly changed over the past 25 years. Technology has improved in leaps and bounds enabling the deaf to “hear”, the blind to “see” and mobility for with physical limitations. Yet even though the majority of working age and younger PwDs would absolutely prefer to work and the technology to make this possible already exists, millions of Americans with disabilities still remain at best confined to sub-minimal wages, sheltered workshops or resigned to dependency on government benefits that traps them into a lifetime of poverty.

    Our research and the research of many others have conclusively demonstrated that a key reason for lack of inclusive employment for PwDs is rooted in the stigma about PwDs as employees. Employers wrongfully feel that PwDs are not able to do the work, are too expensive to support in terms of capital investments, or fear repercussions of firing someone with a disability. In addition, many job training programs and vocational rehabilitation programs follow ineffective practices which just lower expectations all-round and feed into society’s entrenched beliefs about the lack of ability of PwDs.

    Much is happening on this front in the implementation of the Workforce Innovation and Opportunity Act. I published a large article on that topic in this publication earlier. Developments on that front are more exciting than ever and the philanthropic community should pay attention as $17 million a YEAR is invested to enable people with barriers to work to have job and career opportunities through that program. But spending money on things that work, instead of pouring it down the drain in failed programs and bloated salaries, so many can have a better future. Philanthropy can make a big difference on this front! Thanks for your work!