Month: April 2016

A Housing Challenge for Young Adults With Special Needs

download (57)14% of American children are born with a developmental disability. 8% are born with a learning disability. 7% are diagnosed with ADHD. 2% are born with an Autism Spectrum Disorder. And while some of those numbers overlap to a degree, the end result is that roughly 1 in 5 American children require some form of extraordinary support. Of those, roughly 1 in 15 will continue to need extraordinary support well into what is traditionally considered ‘adulthood.’ But what about those young adults with special needs (YASNs) who are trying to keep up with what society expects by moving out on their own and enjoying the thrills of independence?

Fortunately, there are several options. Unfortunately, it can be all but impossible to know which one is ‘right,’ if that word even has real meaning in this context. The first big decision is between:

• A group home, where several-to-hundreds of similar individuals are all making the same journey together;
• Living with one or more roommates, each supporting the other in learning the necessary skills for independence; or
• A backyard apartment or second suite built on the family’s existing property, where the family can come to help in a pinch and continue to be active in their YASN’s lives.

Questions That Must Be Asked Before Making the Decision:

• Can I live entirely alone — and do I want to?
• What kinds of specialized support would I need to live entirely alone?
• Do I want to live with roommates, shared meals, and a schedule?
• Do I want to live with neighbors, supervised activities, but plenty of alone time?
• Do I want to live with another family, and be treated like a member of that family?
• Do I want to live with another family, but be mostly left alone to do my thing?
• Do I want to live near my family, but in my own space, with little supervision?

Research That Must Be Done Before Making the Decision:

• How will my funding change as I turn 18?
• What State and Federal sources of money exist for someone with my special needs?
• What assistance can my school/teacher provide before I graduate from school?
• What (if relevant) does my case manager think I could take advantage of?

Tips on Finding the Right Place:

• Try to keep your whole family involved.

• Consider carefully the bus routes, restaurants, grocery stores, parks, and other attributes of each neighborhood your potential new homes are located in.

• Start your search with three lists: the list of things that you need (i.e. ramps, a guest room, lawn maintenance included), the list of things that you want (no roommates), and the list of things you want to avoid (i.e. a fire station across the street.)

• As you find places you think you might be interested in, make sure they have all the things you need and none of the things you want to avoid. The want list is your negotiable list — you’ll have to balance it against your budget.

• As you narrow your list down, make a chart including the name, contact information, address, and how many ‘wants’ they have.

Once you’ve gotten it down to a few good choices, you can talk to each one over the phone or visit in person until you find a place that makes you comfortable and confident in your desire to live there. But you’re not quite done — there’s an important skills assessment process you should go through before you start your search. We’ll cover that in a future article.


When Children With Special Needs Become Adults: Housing Pains

download (56)The celebration of independence that occurs when a child moves out of the house for the first time is a uniquely American phenomenon; our emphasis on independence and self-reliance makes living on one’s own a noble goal. We even poke fun and those who have trouble making the big step — anyone remember Failure to Launch? And yet, for some families — in particular those who have children with special needs — ‘launching’ can be a genuine ordeal.

If your child has an Autism Spectrum Disorder (ASD), for example, the struggle to coordinate the hunt for a suitable home with the support services necessary to allow them to live without your constant presence is complicated and stressful on many levels. Before we get into the current story, however, let’s take a look at how housing services and support has changed over the past half-century.

A Brief Timeline of Residential Support and Services

• Pre-1970s: While adults with developmental disabilities have been around presumably as long as the rest of the human race, their status before the Civil Rights movement was essentially ‘ignored.’ Local groups existed in some places, but most adults with disabilities lived with their parents or siblings or were placed in the same State-run system as any other orphan. Many adults with ASDs and little family support ended up in institutions alongside people with genuine psychiatric disorders.

• 1970s: On the tail end of the Civil Rights movement, a push to ‘humanize’ many of the nation’s institutionalized people led to the closing of many of those places. The government turned toward the idea of ‘community living,’ and started to establish systems that would allow adults with special needs to live near service providers… but it was slow to evolve.

• 1980s: States implemented a wider away of community-based services based on a ‘provider agency’ model. Provider agencies — non-profit groups that were largely started and organized by parents — contracted with the government to provide services and support for a specific community. A person with special needs would move into a community that offered the support they needed most.

• 1990s: A movement which arose in the 80s finally began to take root: family-based care. States began to implement programs that supported families willing to care for their own adults with special needs. This allowed them to stay at home (much like in the pre-70s), only with significant financial and operational support from the government.

• 2000s: The family-based care model was expanded with the introduction of Medicaid waivers that allowed private companies to access Federal funds if they provided care for adults with special needs. Because Medicaid money is controlled by State law, there was no one ubiquitous improvement, but in general, more money should have meant better

Today: As health care costs continue to skyrocket, State and Federal funding, while more plentiful than ever before, are rarely enough to keep up. Families attempting to find a first-time home for a newly-adult with special needs must line up a variety of source both public and private, often supplementing with their own money, to afford such a home. In fact, most State- and Federally-subsidized housing options for young adults with special needs have waiting lists between 3 and 15 years long. So even if you’re reading this and you’re still years away from looking to move out of your parent’s home, it can pay enormously to get started now!

Making The Disabled Economically-Abled

download (55)Sustained policy interventions can ensure a level-playing field

According to the World Health Organisation (WHO), around 15% of the global population, or an estimated 1 billion people, live with disabilities, and 80% of this PwD (Persons with Disabilities) population resides in developing nations. It is also estimated that 6% of India’s population (roughly 72 million) suffers from some form of disability or the other, and notably only around 3-4 million of these are educated.

Without doubt, the disabled represent the world’s largest minority. However, there is a key geographical difference here – 90% of children with disabilities in developing countries like India do not attend schools and are grossly under-represented in higher education, whereas in the developed nations of Europe and the US, the disabled are mainstreamed in education. For example, in the UK, PwDs undergoing higher education are eligible to receive a generous Disabled Students’ Allowance, irrespective of their financial status. In undergraduate courses too, PwDs are provided a number of other monetary benefits such as Disability Living Allowance, Personal Independence Payment, Income-Related Employment and Support Allowance, Housing Benefit, Tax Credits and Universal Credit.

Similarly, in the US, most top universities provide need-based financial aid and generous fee waivers to PwD students. Such empowerment of students with disabilities to ensure a level-playing field is missing in India.

So, the question arises: “Why are PWDs in India broadly unrepresented in even elementary education, let alone higher education and employment?” The answer lies in our socio-cultural fabric. Denial of equal opportunity for PwDs emanates from the social stigma that exists – so much so that in many cases the disability is hidden and unreported. Some root causes include non-accessibility of educational material; unfriendly infrastructure in transport, colleges and workplaces; absence of relevant education policy and schemes; and widespread apathy in the society and the state at large.

This was demonstrated by the Supreme Court’s recent frustration over several states not showing any progress in the implementation of various provisions of the Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

The fact that traditional and orthodox interventions in India like welfare, reservations, concessions and subsidies have failed (as evidenced from the low levels of employment of PwDs), this gives a strong message to the government to relook and reengineer policies. The average employment rate of PwDs is only 0.28% in the private sector and 0.54% in the public sector. A recent WHO report shows that 87% of PwDs in India work in the informal sector.

Hence, the government, which is the biggest potential employer of PwDs, needs to encourage proactive intervention through rehabilitation, finance for training and entrepreneurial ventures, social protection and grievance management mechanisms.

Certain sectors are especially suited for the disabled and can absorb people with specific disabilities.

The International Labour Organisation (ILO) has identified 20 high growth sectors ideal for PwDs – which are auto, BFSI, building and construction, chemicals and pharma, education, electronic hardware, food processing, furniture, gem and jewellery, ITeS and BPO, etc. It is noteworthy that these are also the leading growth sectors with a major contribution to national GDP. The focus of the government should be on absorbing PwDs in these sectors where skills are in demand.

There have been recent policy developments that are most encouraging.

According to a new IIT scheme, the decision to waive off fees for PwDs could provide a model for increasing their enrolment in other educational institutions too. This is a path-breaking move that has the potential for a chain reaction. More importantly, it serves as a much-needed signal of positive intent.

The new ministry of social justice and empowerment (MSJE) and the Department of Empowerment of Persons with Disabilities (DEPwD) under the MSJE have begun to put in place progressive schemes and policies that ensure better opportunities and protection of rights for the economic rehabilitation of PwDs. It is a step towards meeting its objective of training and employment of 5 lakh PwDs in the next three years, with the overall target of 25 lakh by 2022.

The Seventh Pay Commission is likely to recommend work-from-home for the disabled employees- touted as a big win to boost PwD confidence and overcome poor infrastructure and accessibility issues.

The government’s ‘Accessible India’ campaign with a plan to rate and reward public and private companies for disabled-friendly initiatives will result in more inclusive hiring policies (generally skewed against the disabled) and sensitivity towards the need for ‘accessible’ physical infrastructure. Again, this could have far-reaching implications if integrated into the government’s mega ‘Smart Cities’ plan.

The ongoing review of the National Building Code of India (NBC), by the Bureau of Indian Standards, has a good proposal. With large-scale construction taking place across India, stipulation within the NBC on making buildings accessible, and there is also popular demand to include disability access in the main text of the NBC and not as a separate annexure (as is the case right now).

The recent Kerala Administrative Tribunal’s (KAT) order to include a PwD candidate (who succeeded in the prelims and final written tests) in the rank list of Deputy Collector in the Land Revenue Department is likely to put an end to the PSC practice of conducting ‘suitability assessment’ of PwD candidates.

Estimates vary, but bringing PwDs into the mainstream employment market could result in upwards of a 0.85% increase in GDP. Not just this, decades of western experience in managing PwDs suggests that rehabilitation and custodial-care systems can be unnecessarily expensive and counterproductive due to the high cost of institutions. Instead, the focus should be on training, inclusion and accessibility of work and work environments that can lead to significant economic returns.

To view the disabled as an economic resource, it’s very important to view them as permanent members of the economy. The PwD sentiment is aptly captured in a 2003 publication of the Australian Human Rights Equal Opportunity Commission. It said, on behalf of the disabled, “Don’t judge what I can do by what you think I can’t.”


The 3 Things to Look for in a Disabled Transportation Service

download (54)It has been more than 25 years since President George H.W. Bush signed the Americans with Disabilities Act into law. Over that span of time businesses, public spaces, and transportation services have become more accessible for the disabled. While the progress thus far is encouraging, the job is far from complete.

Recently, great strides have been made when it comes to travel – especially within major metropolitan cities. There are many options that exist; you can even ride in style thanks to VIP disabled transportation services! However, there are a few things to look for when deciding which of these is right for you or your loved ones.

Accessibility isn’t just about having ramps; it’s about being able to live a normal, fulfilling life!

1. Choose a Disabled Transportation Service with a Strong Customer Service Record

While many cities have made valiant efforts to make their public transportation options more accessible, the truth is many bus drivers, subway operators, and taxi drivers aren’t properly trained on how to interact with and assist disabled persons.

Any private service worth its salt will ensure their drivers are not only certified, but courteous and respectful. Many services employ drivers that will go above and beyond to treat passengers with compassion and care. Research any testimonials and read as much as you can online to learn more about the company you’re considering.

2. A Disabled Transportation Service Should Cater to Your Exact Needs

Being faced with getting to and from medical appointments, work, and the airport on time can be a daunting and complicated matter for those in wheelchairs. Punctuality can be especially stressful for someone like a returning veteran who recently lost full mobility due to combat.

The fact is disabled people must make it to their medical appointments whenever required – and sometimes in a hurry. The right service will recognize and cater to these needs. Most will offer door to door pick up and drop off, and some make the extra effort to be available the same day you call.

3. A Disabled Transportation Service Should Help to Make Your Life Easier

As mentioned previously, public transportation can fail you. Wheelchair ramps on buses may be out of service, or add a lot of extra time to your commute due to how slowly they operate. Friends and family will almost always go the extra mile to lend a helping hand, but may not appreciate the tire tracks left behind on their roof or back seats.

However, VIP disabled transportation services make use of roomy vehicles specifically designed to meet ADA requirements, and make your trip as quick and comfortable as possible. Time and stress are both saved by finding a transport service that recognizes and serves the specific needs of the disabled.