I was always a good student: curious, hard-working and eager to learn, probably too eager in science! If you know Miss Page, my high school science teacher, please tell her that I apologize. My best teachers though have not been in a classroom. They are the ones who have taught me about life in general and in particular, living with a life-long disability. In this, I have had two of the best teachers; my children and adults with disabilities. During the years when my own kids did not have the ability to communicate these adults provided me with firsthand insights I would not otherwise have had access to. I continue to learn from them as I prepare my children for their own adult lives. Like all mothers, I would like my kids to be happy, live their lives and be as independent as possible. Whenever I get a chance, I ask adults with disabilities what they think I should be focusing on in preparing my kids for an autonomous adult life. Opinions vary as expected but there are some that keep coming up over and over again last the top five factors that promote independent living for people with disabilities.
Access to quality education is not only a fundamental right for all children but forms the foundation from which they will launch their independence. Of course, most parents are acutely aware of that, which is why it is one of the major sources of stress for parents of kids with disabilities. In many parts of the world, there simply are no schools that can accommodate students with additional needs. In other areas, while students can physically be included in a classroom there may still be innumerable barriers preventing them from receiving good quality education.
As a parent, start by being clear about your child’s needs and what you are looking for in a school. Only after you’ve clarified that should you go out and research the schools that you have access to. In your search it’s important to focus on your child and their individual needs. Sometimes the most suitable school will be a local school and at other times, it will be a special needs school.
There are parents who struggle with sending their child to a special needs school. To some, it represents giving up on their child leading “normal’ integrated life. All families are different and parents will choose the kind of school that aligns with their values.
For me, the question I asked was ‘ which school is best equipped to meet my child’s current needs?’ My two kids have the same diagnosis. When they were of school age, I chose a special needs school for one and a local public school for the other. Though different, each school was the best choice for each child.
What matters most is access to good quality education because it is the foundation for independent living for everyone, including individuals with disabilities.
2. Health Care Access
In many parts of the world, having a disability can often mean reduced access to health services. Various studies have identified the lack of adequate financial resources as the biggest barrier to access. This makes sense of course because individuals with disabilities generally have higher levels of unemployment and underemployment compared to those without disabilities. Sadly, even when free or affordable healthcare is accessible to the general population individuals with disabilities still experience various barriers to healthcare including physical, transportation, communication and others.
One of the most frustrating barriers I have heard discussed is the attitude of some healthcare providers. Adults with disabilities who are fully capable of describing their needs have found that some healthcare providers prefer to address the accompanying individual without first establishing whether or not the patient is able to speak for themselves!
Health care access is complicated and varies widely. As parents, we have to consider our local context and figure out ways to improve access for our adult children. For my family communication is the first immediate barrier. To help overcome this, I encourage my children to speak for themselves as much as possible during medical visits. Secondly, we live in a place where the official language is not one that my children are proficient in. Our plan is to move at some point for the sole reason of removing the language barrier in our children’s abilities to communicate with healthcare providers. We know we wont always be around to be their translators. It wont solve all the challenges to health access, but it will take care of one major one for us.
The data are not encouraging but there is reason to be hopeful. While people with disabilities continue to be disproportionately unemployed and underemployed, there are signs that things are improving slightly. In many parts of the world, government initiatives are encouraging employers with incentives to employ people with disabilities. For many individuals, being self-employed has been the best option.
My kids are still a long way from employment and I really have no idea what opportunities they will end up taking advantage of. I keep a keen eye on anything and everything to do with employment for individuals with disabilities in my community. Over the last couple of years I’ve noticed a few organizations come up that help with securing employment, both private and government agents. Like most parents though, I expect that our family will have to do our own ponding of the pavement rather than relying on government agencies. For the suitable employer, I plan to offer to help with the application for the government grants that are meant to encourage employment of individuals with disabilities. I am hopeful that each new year will bring more employment opportunities for people with disabilities.
Access to a convenient means of transportation has been identified as one of the most important factors that promote independence. Transportation allows all of us to freely reach grocery stores, health services, jobs, places where we socialize and generally be integrated in our communities. When we are not able to move freely within our communities, it is not possible to fully contribute nor take advantage of everything our communities have to offer. Not all communities have reliable, affordable and safe public transit systems.
We are fortunate to live in a large urban area with great public transit. There is even a light rail system under construction just down the road from our house. The challenge for our family is ensuring that our kids can confidently take advantage of this transportation network. It’s a journey that started a few years ago with just learning to tell time, which led to reading timetables and further down the road, taking public transit. At least, that’s the idea.
5. Access to Housing
Shelter is a basic human need and it is an issue that I have thought about for many years. For many parents as well, considering where and how your child will live is a major factor in answering what’s probably the most important question for parents of kids with special needs “what will happen to my child when I am gone?”. Shelter is a basic human need and yet so many people with disabilities have no access to housing. This may be because of one on the factors already discussed above. People with disabilities are generally under-employed, so they may not be able to afford market rents or to buy a house.
Even when they can afford to pay the rent, there may be a shortage of suitable housing in the area, or it may not be accessible for those who need it to be.
Sometimes, landlords don’t want to rent to people with disabilities. Of course this is illegal in many countries, but that doesn’t mean it doesn’t happen. I have known families who have spent years looking for accommodation for their adult children. Even when they felt that they were denied a place because of their child’s disability and they had all the laws of the land behind them, they simply didn’t have the energy, time nor the money to file official complaints. They just moved on and kept on searching.
My dream is to own a small multi-unit building specifically for individuals with disabilities who wish to live on their own. It would be a small community where the individuals would be able to rely on each other have a garden etc.
Knowing that our city has a severe shortage of suitable housing for people with disabilities, we decided to buy small, Multifamily rental accommodation which will one day, not only provide housing for our own kids but also a source on income.
For some parents, making arrangements with family or friends to provide housing when your child needs it may be an option. For others, government agencies and community organizations may be your option. Even if you wont need accommodation for your child with special needs anytime soon, it’s still worth being aware of the options in your community.
Individuals with disabilities face enormous challenges on their road to independence. Even with just the five factors that promote independent living discussed in this article, the barriers can intertwine and form a complicated tangled web. Untangled that web and enabling these 5 factors will go a long way towards promoting independence for individuals with disabilities