Javier Vasquez, VP Health Programs Special Olympics

Healthy athletes
Special Olympics trains public health workers

Javier Vasquez toils on the front lines of global healthcare policy to ensure athletes with disabilities have access to healthcare. As Vice President of Health Programs for the Special Olympics (SO), he is a lawyer who helped expand the health screenings of athletes during the Games and thereafter, when they return to their home. Vasquez’s interest in disabilities stems from years of witnessing first-hand the bleak conditions many institutionalized people with intellectual disabilities endure in psychiatric hospitals around the world. ABILITY spoke with Vasquez about his impassioned work with the SO, and their long-range goal of making healthcare a sustainable reality for people with intellectual disabilities in their home countries.

ABILITY: How did you become part of the health programs of the Special Olympics?

Javier Vasquez: I was in the World Health Organization for 17 years as the human rights advisor in the region of the Americas covering North, Central and South America, and the Caribbean. I worked primarily on mental health issues and also issues related to health law and policy reform in countries. I began my career visiting psychiatric hospitals and their mental health services with the World Health Organization (WHO) when I realized that there were so many people with intellectual disabilities who had been institutionalized and who were isolated in psychiatric hospitals under deplorable conditions. I developed this interest in intellectual disabilities.

ABILITY: Is your background in health?

Vasquez: I’m a health law lawyer. I worked in a mental health institution in Panama for two years studying the connections between human rights and health. After WHO, I wanted to work for people with intellectual disabilities, so for the Special Olympics I had the opportunity to work on their global health programs that involve scaling up the health screenings of athletes. It’s part of the Healthy Athlete program, which tries to make healthcare sustainable after the Games for people with intellectual disabilities, so we work with a country’s ministries of health, health authorities, the WHO and other international organizations to ensure primary healthcare services are available in the community and in general hospitals.

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Part of my job is to facilitate the referrals and follow-up care for athletes for healthcare services that, for the most part, are part of the ministries of health. So as you can imagine, now Special Olympics can be a public health leader that is sharing the data we’ve collected on healthy athletes with the governments, the ministries of health, UN agencies and the WHO. We are also sharing our platforms, inviting them to come to the Games, to come and see healthy athletes. We always try to have representation from the ministries of health in our Games. And now we are implementing our health strategy, which is the Global Strategy 2016-2020. One of our targets is training healthcare professionals. Here in Abu Dhabi we launched a new initiative to train 10,000 public healthcare workers, including community healthcare workers, over the next five years in 20 developing countries. We want to work with the ministries of heath to make healthcare sustainable after the Games for people with intellectual disabilities in national health systems.

ABILITY: So beyond mental health, you want to include follow-up in all health areas?

Special Olympics to train public health workers
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Vasquez: Yes, in all health areas. Because every national healthcare system should have policies, plans, laws, and services that allow people with intellectual disabilities to be treated like anybody else, whether in general hospitals, primary healthcare, clinics, or in community-based services. So what we are trying to do is to mainstream intellectual disabilities through all the areas of health that are a part of the system: communicable diseases, non-communicable diseases, risk factors, issues related, for example, to HIV, tuberculosis, malaria, family health, maternal health, health promotion, mental health, and of course disability. As you can imagine, this should have been done many years ago, but 20 years ago national healthcare systems, services and ministries of health were not including intellectual disabilities in their plans or programs.

The screenings that we are doing at the World Games is temporary. Our concern is what happens to athletes and other people with disabilities once they leave the Games. We think that a good strategy, which we presented in a global forum in Abu Dhabi, is to facilitate and to work with the ministries of health and the health authorities of all countries of the Special Olympics to train public health workers about intellectual disabilities.

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ABILITY: Right now you have this large group, going through this one-time event. Have you been able to capture their data so they can follow-up on any medical needs once they go home?

Vasquez: Yes. It’s a process we began two years ago when preparations for the Abu Dhabi Games began training clinical personnel.

ABILITY: That’s right, you were here already from the previous year.

Vasquez: We were here during regional Games, but also during the train-the-trainers, which is training health workers from the national health authority from Abu Dhabi and UAE on intellectual disabilities and screenings for athletes. We have been doing that prior to the Games. That is one of the legacies of following-up on athletes. Most of the clinical directors, clinical personnel, and health workers you see here doing the screenings will go back to public or private clinics, hospitals, or health services. So already you can see that the Games are influencing the national healthcare system in the UAE and in Abu Dhabi. That is regarding the personnel.

We are collecting data from the screenings done in the healthy athletes program and then analyzing the data. There will be specific data that will show the health problems that athletes are going through. Of course this data that is collected among the athletes is not reflecting the situation of other people with intellectual disabilities. However, it is very important, because you will see data after this week related to vision, oral health, flexibility, health promotion and hearing. And this will continue to give us information about what is happening with the health of people with intellectual disabilities. We need to now move towards what is called longitudinal data or data that is collected by the ministries of health in the national healthcare information system of all people with intellectual disabilities in a given country.

In most of the countries the WHO works with, the data that is in the national healthcare systems don’t reflect intellectual disabilities; it has not been disaggregated in the context of intellectual disabilities. It’s general disability data and it’s not giving us information about intellectual disabilities. This is what we’re doing right now and is the reason we invited the WHO to Abu Dhabi. WHO’s Director-General expressed an interest in working with Special Olympics in order to protect the health of people with intellectual disabilities, and this requires changes in national healthcare policies, plans, and information systems.

ABILITY: Do you have something like HIPAA?

Vasquez: Yes. Most of the countries have very similar regulations and laws, either in their constitutions or in their disability laws and other laws. The right to privacy is a very important issue. It’s important to work with the ministries of health and the WHO in order to have the agreements that are necessary to collect the data and analyze the data without infringing on anyone’s rights, such as the right to privacy. Also, we are very respectful of not only the national laws but also of the CRPD (the Convention on the Rights of Individuals with Disabilities) that has been ratified by close to 160 countries. It has provisions regarding the right to privacy and also provisions on the obligations of countries when collecting data. Obviously, these obligations change depending on whether the countries have ratified the CRPD or not.

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ABILITY: I think most of them have. The problem, of course, is implementation.

Vasquez: Yes, yes. But it’s important that even if the country is not yet implementing the entire Convention, it’s very important that the Special Olympics always refer to those obligations and remind governments that they have obligations on the right to health for people with disabilities.

ABILITY: Do you know much about the CRPD when it comes to mental health issues?

Vasquez: Yes. The right to mental health is included in article 25 of the CRPD, which, in my opinion, is the most comprehensive article on the right to health in international human rights law. It includes mental health and the obligations of countries to promote and protect the right to the highest available standard of health for every person with disabilities, including people with intellectual disabilities. It also includes obligations on the sexual and reproductive health of men and women with disabilities. That article of the Convention also refers to obligations of countries having programs, services, plans, laws, policies that promote and protect the health, mental health included, of persons with disabilities and of course includes persons with intellectual disabilities.

ABILITY: It sounds like you know article 25 very well.

Vasquez: Yes, because when I was with the WHO in the regional office for the Americas, I represented WHO in the negotiations of the Convention for four years with governments. I helped draft the negotiations on the Convention, and our team in the WHO was very involved in the formulation of some provisions, such as article 25. I think it’s a very comprehensive article.

ABILITY: Are you familiar with what the Convention says about involuntary treatment?

Vasquez: It’s interesting because we had those discussions during the negotiations of the Convention and at WHO’s regional office for the Americas. We wanted to see provisions specifically in the context of involuntary admissions to psychiatric hospitals, the periodic review of those involuntary admissions, and the issue of the review bodies that all mental health laws should have in order to review periodically the legal capacity of persons with mental and intellectual disabilities. The member states decided that they did not want to have a specific article on institutions and involuntary admissions. So your question is very important and very valid. I think it would have—it should have been there. It’s a major issue for people with mental and intellectual disabilities.

What happened is that the right to personal liberty and personal freedom is somehow referring to the right to live in the community. There is another article in the Convention that specifically refers to the right to live and work in the community. But it’s not addressing the issue of what are the obligations of state parties to the Convention with regard to involuntary admissions to hospitals.

Right now, I can tell you that when I travel through the regions and countries of the Special Olympics, this is an issue. We still have thousands of individuals with mental and intellectual disabilities who are deprived of liberty, living in institutions under deplorable conditions. In some regions we have seen adolescents chained to trees. This is an issue that Special Olympics is starting to speak about at the UN level—the Committee on the Rights of People with Disabilities. At these Games we have the honor of having the UN envoy of the Secretary General on Disability and Accessibility, María Soledad Cisternas Reyes. She has been addressing this issue, too, as the representative of the Secretary General of the UN, speaking about the right to live in the community of people with intellectual and mental disabilities.

ABILITY: When you say “intellectual disabilities,” does the definition for the Special Olympics include the full autism spectrum?

Vasquez: Yes. It includes cerebral palsy, Down syndrome, brain injuries, and disabilities that have to do with adaptive behaviors.

One important thing is that we are always underlining abilities, the abilities of the person with intellectual disabilities. The athletes here are showing the world that they have incredible abilities on the field but also off the field, when they speak, for example, to government officials, when they speak to ministries of health, and when they go to the UN and speak to the governments that are part of the CRPD.

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When we invite athletes, for example, to be interviewed, to participate in a health forum or the working groups, they show their abilities. They share their incredible ability to influence policies and laws and services. This is what we want to see: leaders with global messages who are athletes, but who also transform policies, plans, laws, health services, education, employment and implement the CRPD. In the years to come, I think that what we’re going to see is an inclusion revolution that is led by the athletes, by leaders, and by athletes with intellectual disabilities who, for many years, were hidden and invisible. The Special Olympics is facilitating tremendous participation and influence of people with intellectual disabilities in the structures of the country. That is what we want to see.

I thoroughly believe that athletes are the ones who will transform even the most complex laws related to health and human rights. Let me give you an example. There’s a process that’s already finished in Peru about reforming the civil codes. As you know, in 170 countries the civil codes are outdated. They have not been reformed according to the CRPD.

ABILITY: Are civil codes similar to civil rights?

Vasquez: The civil codes are the laws that regulate issues related to the capacity to make decisions, issues related to the capacity to, for example, buy property or get married or have a family. They’re laws that relegate some civil and political rights. In most of those civil codes, persons with intellectual disabilities are excluded from making decisions.

ABILITY: Like voting?

Vasquez: Voting, getting married, making decisions on healthcare, treatment or education, for example. Those civil codes consider persons with intellectual disabilities as not having the capacity to make decisions, which is a right. Only the guardian could make the decision. CRPD changed that and said that the capacity to make decisions had to be reviewed periodically because any person, with or without a disability, has the right to make his or her own decisions.

So what happened in Peru is athletes were invited to speak before the Inter-American Commission of Human Rights. They shared the obstacles they were facing to make decisions on employment, education and marriage, and that generated the process to reform the school code in Peru. Finally. It’s been a long process. The civil code was reformed, and now all persons with intellectual disabilities in Peru will be able to make decisions.

Of course, there are adjustments and accommodations depending upon the disability and the guardianships that need to be reviewed, but in principle all persons with an intellectual disability should be able to make their own decisions and to be supported to make those decisions. Civil codes were also changed in Argentina. We see very positive changes.

ABILITY: Were you part of that change?

Vasquez: Oh, yes, absolutely! I was part of the CRPD negotiations, and when I was with WHO I also worked very closely with some governments and ministries of health and with the legislators to reform some of those civil codes. For example, in Argentina I was very involved in the reform of the civil codes and the national mental health law, according to the Convention. WHO played a very significant role in accomplishing those reforms. And now, as vice president of health for the Special Olympics, I use this expertise to help governments update their civil codes and their laws. Here, in Abu Dhabi, we have been speaking very openly about the CRPD and the importance of the UAE government committing to make any necessary adjustments.

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