The Collective Voice of NGOs Serving Individuals with Intellectual Disabilities

China Development Brief, no. 48 (Winter 2010)

中文 English

This article showcases some important trends in the grassroots NGO sector in China. One is the growth of networks among NGOs serving people with disabilities.
Over the last few years, formal and informal networks have grown among environmental, HIV/AIDS, gender, and even legal aid NGOs. Here we see an example of networking in yet another sector that is also supported by Narada, a private Chinese foundation that has been at the forefront of the philanthropy sector. This story also highlights opportunities and challenges for service-oriented NGOs. The opportunities come in the form of more funding sources for NGOs with the growth of private foundations, and government contracting to NGOs to deliver services. NGO collaboration with the government and business is common in the West, but rare in China until the last few years. The challenge for NGOs is to raise the quality of their service delivery to meet the standards of local governments. As the Chinese government moves forward in its efforts to create a more educated and professional civil service, NGOs will have to keep pace if they want to win government contracts and be accepted by the mainstream. 

On November 29 and 30, 2010, China’s first Research and Development Forum for NGOs Serving Individuals with Intellectual Disabilities was held in Beijing. More than 100 representatives from more than 60 organizations from across the country gathered for two days of discussions. They focused on issues that included equal policy treatment for NGOs in the field of intellectual disabilities, organizational development and operations, early education, employment services and community life, placement for those with intellectual disorders, and building a platform for a network of NGO working in this field.

Has Lizhi Been Going in a Circle for 10 years?

This year is the 10th anniversary of Beijing Lizhi Rehabilitation Center (北京利智康复中心). In China, any grass-roots organization that has survived for 10 years or more has experience worth sharing.  At the forum, Xiao Peilin, founder of Lizhi Rehabilitation Center, said that through Lizhi’s efforts, more than 60 young people with intellectual disabilities had joined the competitive workforce1. Lizhi has developed a set of effective work procedures. Yet in retrospect, the current Lizhi has changed much from the Lizhi of 10 years ago. In terms of space, capital, personnel, policy influence, and cooperation within the profession, its situation remains largely the same even as society has changed rapidly.

The challenges and pressure that individuals with intellectual disabilities and their families face continue to grow, creating unprecedented stress on the entire sector of intellectual disability NGOs.

The problems that Lizhi has encountered are not limited to one organization. They extend to all service organizations of this type. According to incomplete statistics, the number of NGOs serving people with intellectual disabilities number in the dozens in Beijing, and in the hundreds in all of China. They are concentrated in large and medium-sized cities. For the past 30 years, the model of individuals with intellectual disabilities being cared for only by their families has gradually changed to a more diverse model. More people with intellectual disabilities are getting out of the house. They therefore need more professionals and organizations to provide them with quality professional services in rehabilitation, education, and other areas. Chinese NGOs providing services to individuals with intellectual disabilities have emerged over the last 30 years, but society and government still do not understand them much.

With funding from the Narada Foundation (南都公益基金会), Lizhi hosted the forum for NGOs in the field of intellectual disabilities, using this event as their coming out party. The organizers hope to use the forum to promote communication and exchange within the profession and to make the voice of NGOs in this field heard. They hope to influence the development of policies beneficial to people with intellectual disabilities and their families, NGOs in the sector, and the community.

Narada Foundation vice-president, Xu Yongguang, said he hopes this forum can make their voices be heard, so that more people pay attention to these groups. To this end, Xiao Peilin wants to collaborate with Beijing Normal University’s Philanthropy Research Center to write a research report about the sector to submit to government departments.

According to the participants at this Forum, “We want to do something together, we must consider what is in our common interest. From an interest perspective, we need to seek more government resources, and gain support from foundations such as Narada. We can use our common mission and interests as a way to get the attention of the government and raise funds.”

In an important outcome, the forum participants reached a consensus to hold the “Intellectual Disabilities NGO Leadership Forum” annually.  Based on factors such as influence, region, and gender, NGOs would form into regional groups representing eastern, western, northern, southern, and central China, and democratically elect five organizations. These organizations would make up the organizing committee for the forum’s second session.  The goal is to professionalize and marketize the services for the intellectually disabled, and promote the healthy and sustainable development of NGOs2.

Are Intellectual Disability NGOs Ready?

At the end of the forum, Tsinghua University’s Professor Wang Ming provided a clear analysis about this era of development for China NGOs. He noted that NGOs must be prepared because China is entering a new era for civil society. NGOs in China are marching at the forefront of this historic era.

Wang Ming went on to say, “Former UN Secretary General Kofi Annan said in 1999 that the 21st century would be the century of NGOs. At the time, I said it was far from that. But after 10 years I found the age of NGOs really has arrived.” He offered three reasons for his optimism.

First, the most important resource for NGO survival and development is undergoing significant change. Total charitable donations in the past few years have grown; it was more than 100 billion RMB in 2008, and more than 30 billion RMB in 20093. In 2010, public donations for the earthquake in Yushu totaled 10 billion RMB. In addition to changes in the total amount and the structure, Chinese people now have money to engage in charity. This is a historic change. Many wealthy people are now able and willing to support foundations. He predicted, “within five years, private foundations will surpass public foundations not only in numbers, but also in terms of funding and total assets4.”

Second, on the government side, Wang observed, party and government departments at all levels regard building a harmonious society, and some even mention civil society, as their first order of business. Although the well-known effort in government procurement of services is still limited, it is also very recent. Different localities only came up with standards [for procuring services] just over a year ago. In Beijing, 100 million RMB has been used to purchase social services. Government purchasing of services opens up the space for public services5.

Third, this field has already seen the emergence of a new generation. Young people have matured, which means that the development of NGO has entered a youthful period. This new generation has a good foundation and environment. We are moving into a new era for the development of NGOs and civil society.

At the same time, NGOs face many challenges. He asked the participants, “When someone provides money, can you spend it well? Can you provide professional services? This will be your big challenge.”

How should service organizations respond to this wave of public welfare charity? With regard to the overall trend, the government faces many problems in terms of policies, laws, and the system, but they are moving forward. Their progress poses a great challenge for NGOs. Li Jing, Assistant Researcher at Chinese Academy of Social Sciences said: “Actually I’m quite worried about the development of NGOs serving those with disabilities because as the government keeps pace, its demands will increase6”.

Li revealed that among organizations serving people with disabilities in Beijing, some of them voluntarily sign up every year for annual institutional assessment [by the city government]. Based on the assessment, they receive varying amounts of financial support based on a grading system. However, an important change was made in the 2010 assessment model that Li Jing was partly responsible for. After December 13, service organizations undergoing the annual assessment will be required to submit a list of service users before the end of November, and conduct a satisfaction survey of the service users. This survey will be part of the appraisal and ranking of the service organizations, and the rank and funding will be linked. The amount and scope of funding will be larger than in the past. There are nearly 80 disability service organizations in Beijing, so the selection range will expand, and the competition will become more intense.

Beijing city authorities have also issued an official document making it easier for disability organizations to register. The document states that any organization working with people with disabilities can register using the Disabled Persons Federation (??联) as the professional management unit. They only need go to the district or county level DPF to apply, and be registered with a minimum capital requirement of 30,000 RMB. The district or county-level Disabled Persons Federation cannot refuse according to this policy document, and must respond to the applying organization within 30 working days7.

The fifth China DPF Vice-Chairman Hui Mating spoke highly of this forum. She said, “I have served in schools, the Education Commission, district, city and national-level Disabled Persons Federations, and attended numerous meetings. But this is the first time I have participated in a meeting of this size, with this format, and with this particular community. We all serve people with intellectual disabilities, and we are civil society institutions here discussing our work. I am very excited and very much value the opportunity of this meeting. At this meeting I have seen all the participants consciously participating, and demonstrating a spirit of responsibility. These young people made me feel that we can let them do this work with our minds at ease.”


  1. Editor’s Note: In China, people with disabilities are usually cloistered at home and taken care of by their families. Organizations like Lizhi and Huiling seek to bring these individuals out of the home and into the community by teaching them life skills. 

  2. Editor’s Note: This decision reflects a desire on the part of these NGOs to create a more formal structure for their network. 

  3. Editor’s Note: The wording here makes it seem like donations actually fell in 2009. The 100 billion figure in 2008 actually included 76 billion RMB for the earthquake relief alone, so charitable donations outside of the earthquake relief were actually around 24 billion RMB. Also, donations in 2006 and 2007 were 10 billion and 31 billion respectively so the overall trend in donations has been upward. 

  4. Editor’s Note: Wang Ming actually mentions three types of “private foundations” – nonpublic fundraising foundations, foundations established by private individuals, and foundations established by entrepreneurs and the wealthy – but for all intents and purposes, almost all of these fall under the category of private foundations (the literal Chinese term is nonpublic fundraising foundations) which are distinct from public foundations in that the latter are allowed to engage in public fundraising while the former are not. The rise of private foundations is explored in more depth in our special issue on New Trends in Philanthropy and Civil Society. 

  5. Editor’s Note: Government procurement of social services from private for-profit and nonprofit organizations is common in the West, but rare in China where the government sector has sought to monopolize service delivery. Some scholars thus see government procurement as an important trend because it could create more space and support for nonprofits to operate and influence government policy. 

  6. Editor’s Note: Li Jing’s point is that NGOs are not the only one paying more attention to social issues. The government is also paying more attention to social management and innovation, and as it does so, it will demand a higher level of service from the NGOs it works with as the next paragraph makes clear. 

  7. Editor’s Note: NGOs that want to register with the Civil Affairs office have to find a government agency willing to serve as the NGO’s professional management unit. In the past, many NGOs were unable to find an agency willing to take on that responsibility. As a result, many NGOs ended up taking the easier route of registering as a for-profit business. This paragraph refers to recent changes by local authorities to make the registration process easier by allowing the Disabled Persons Federation, a GONGO, to act as the government sponsor. It is unclear though whether many NGOs have succeeded in registering after the new document was issued. 

心智障碍领域NGO集体发声
刘海英
中国发展简报2010冬季刊第48卷
2010年11月29~30日,中国首届心智障碍领域NGO研究与发展论坛在北京举行。来自全国各地60多家机构的100多名代表齐聚一堂,围绕心智障碍领域NGO政策平等对待、组织管理、自身建设与运营成本、早期教育、就业服务与社区居住、重度和中老年心智障碍者安置、心智障碍NGO之间的网络平台建设等诸多问题开展了为期两天的深入研讨。
 利智10年走完一个圆?
今年是北京利智康复中心成立10周年。在中国,任何一个存活10年以上的草根组织,一定都有值得分享的本土经验。 这次论坛上,利智康复中心创始人肖培琳说,尽管通过利智的服务,已经有60多名智障青年参加了竞争性的工作;在支持性就业服务方面,利智也形成了一套有效的工作流程,但是,回头审视过往的日子,目前的利智和2000年的利智是一样的境遇。在场地、资金、人才、如何有效获取政策支持、行业之间的合作等方面,仍然存在相同的状况。 走了10年,似乎只是在相同的一个点上转圈圈,而社会在这10年中却在高速发展。心智障碍者及其家庭面临的挑战与压力也在不断增加,所有的这些,都给整个心智障碍领域的NGO带来了前所未有的冲击。
利智遇到的问题,不单是一家的问题,而是这类服务机构共性的问题。据不完全统计,服务于心智障碍者的NGO数量,北京有几十家,全国仅有数百家,主要分布在大中型城市。近30年来,心智障碍者由家庭养护的单一模式逐渐向多元化转变。越来越多的心智障碍者走出了家门,他们需要更多专业工作者和专业服务机构为他们提供优质的专业服务,以满足心智障碍者在康复、教育等方面的实际需求,中国心智障碍领域NGO服务就是在这一历史时期应运而生的,但社会和政府对它们的了解却很少。
通过什么方式让全社会了解他们的工作和需求呢?在南都公益基金会的资助下,利智举办心智障碍NGO领域的论坛,也以此为自己“庆生”,更是希望通过论坛增进行业间的沟通与交流,发出该领域NGO的声音,以期影响相关政策的制定与出台,使心智障碍者及其家庭、心智障碍领域NGO,乃至整个社会最终受益。
南都公益基金会副理事长徐永光说, 希望这个论坛能够发出一点声音,让社会更多的人关注这个群体。为此,肖培琳还找到北京师范大学公益研究中心并与之合作,希望可以拿出该领域的研究报告,并给政府相关部门和机构提供参考。
与会者说:“大家想一起做点什么事情,一定要考虑什么是我们的共同利益。从公共利益角度来讲,我们需要争取更多的政府资源,打开基金会这个口子,像南都公益基金会这样支持我们做事。共同使命加共同的利益作为凝聚点,来敲政府的门,募集公益资金。”
本次论坛的一个重要产出,就是与会者达成一个共识,将每年举办“心智障碍NGO领导人论坛”,基于影响力、地域、性别等因素,大家分别在东部、西部、北部、南部、中部的机构中,民主推选出五家机构负责人组成第二届论坛筹委会。搭建心智障碍领域NGO平台,为心智障碍者提供的服务将更具专业化和市场化,并逐步实现社会组织行业的健康可持续性发展。
心智障碍服务NGO ,准备好了吗?
清华大学王名教授在最后总结的时候,对中国NGO所处的时代做了一个非常明朗的分析。他说,我们要做好准备,中国正在进入一个新的公民社会的时代,中国NGO正在走向时代的前台,这是一个历史性的时代。
他回忆道:“联合国前秘书长安南在1999年说过,21世纪是NGO的世纪,我当时说离得远了,过了10年我发现 NGO的时代真的到了。”他列举了三个方面来印证他的判断。
第一,NGO生存发展的最重要的资源结构在发生巨大的变化。这几年的公益捐赠总量在发生巨大的变化,2008年超过了1 000亿,2009年官方的统计是300多亿,2010年社会为玉树地震灾区捐款1 000亿左右。除了总量的变化外还有结构的变化,中国人自己有钱做公益了,这是一个历史性的转变。很多富人已经有相当多的条件来支持基金会,他预测“不出五年,非公募基金会、私人基金会、企业家和富人成立的基金会,不光是数量,还有资金额度,拥有的资产总额都将超过公募基金会。”
另外,在政府一方,王名观察到,最近这段时间各级党政部门都把和谐社会建设,有的甚至提出将公民社会作为党政工作的第一项工作。大家熟知的政府购买服务虽然力度还有限,但才不过两年的时间,准确说一年多时间里各个地方都拿出一些指标,北京拿出1亿购买社会服务,购买服务的背后就是腾出公共服务的空间和领域。
第三,这个领域已经出现更新换代的明显趋势,年轻人成长起来了,这意味着NGO的发展进入年轻化的时代。他们基础好,又面临这样一个好时代,对NGO的发展来说,或者就公民社会的发展而言,我们正在迈向这样一个新的时代。
然而,面临这个时代,NGO面临着很多的挑战。“当有人出钱的时候,你能花好钱吗? 能提供专业的服务吗?这方面接下来的挑战对我们才是实质性的挑战。”他问在场的参会者。
对于服务机构来说,怎么应对这样一种井喷一样的公益慈善的发展高潮?对整个发展的趋势来说,政府在政策、 法规、体制上,虽然也有很多的问题,但是在往前走,这对NGO的挑战也是非常巨大的。 中国社科院助理研究员李敬也说:“其实我是蛮担心助残NGO组织的发展,因为政府的脚步跟上了,政府的要求也会越来越高。”
据她透露,北京市的残疾人服务机构中,每年都有一部分机构通过自愿申报的方式,进行年度的机构评估,机构评估之后就会按照不同的等级给予一定的资金支持。但是,2010年评估方式发生了很重要的改变,李敬恰恰承担了这个改变环节中的一部分工作。12月13日以后进行机构年度评估的,相关部门就会向服务机构要求提供11月底之前的服务使用者的名单,对服务使用者进行满意度调查,这个调查将部分决定服务机构在这次评比中的排名,而名次和资助额度挂钩。这次机构资助的力度比以往都大,范围也比以往宽。北京市的残疾人服务机构将近80家,甄选范围大了,竞争也就更激烈了。
北京市还下发红头文件,所有和残疾人相关的机构,如果申办人愿意申请残联作为业务主管单位,就可以去区县残联申请,有3万块钱注册资金就可以登记,区县残联依照这个政策文件是不可以拒绝的,对申请要在30天工作日内答复。以后对北京市的助残机构来说,注册并不是很难事情。
中国残疾人联合会第五届主席团副主席马廷慧对这次论坛给予很高的评价。她说, “我在学校、教委、区残联、 市残联、中残联都任过职,参加过无数次的会,但是唯独这次会议,这样的规模、这样的形式、这样的群体是我有生以来第一次参加。我们都是为心智障碍者服务的,民间机构坐下来讨论咱们的事情,我很兴奋,也很珍惜这次会议的机会。这次会议当中我看到了所有的参会人员自觉参与 、自觉负责的精神。还有,这些年轻人让我感觉我们可以放心的让他们干。”

CDB Senior Staff Writer

Translated by Helen McCabe

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