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Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Being the sibling of an autistic person

19 Dec

A fascinating news story from a week ago I just caught, it tells the side of the story that is often not captured.

Kate Dansereau, 34, of Fairhaven, who has an autistic twin sister, Julie, recalls her story of transcendence. She’s now an autism consultant for Community Autism Resources (CAR), based in Swansea.

“As I got older… and ‘fitting in’ became more important, it was extremely difficult. I was often embarrassed by her and concerned of my own image and what other people would think,” said Dansereau. “After high school there was a shift in my attitude and I became much more accepting of her differences, and felt the rest of the world should be too.”

So, being around an autistic person made this neurotypical person ‘more accepting of difference’. Is there anyone out there who thinks that’s a terrible thing? Because I’m of the opinion that thats an excellent thing. And something that may never have happened to Dansereau had she not had a close relationship to an autistic person. Would it be to much to sugges that possibly (hang tight now folks) this is a clear positive aspect to autism?

How about this?

“When I was about seven, I didn’t really like him [Taylor] very much because I felt like he was mean,” said 13-year-old Jace King, whose 20 -year-old brother, Taylor Cross, is autistic. “My mom explained to me that he was different and that he had some special talents, as well as some things that he wasn’t so great at, and that was because of his autism.”

“At first it didn’t really register, because I was young and didn’t really understand what autism was,” continued King. “As I grew older we had more in common and we liked each other more, and I was able to understand how it affected him and how it made him a better person.”

How it ‘made him a better person’ eh? I wonder if Mr King realises how many people would attack him for simply believing his brothers autism made him a better person?

How about _this_ :

It’s also become common knowledge that over time, as King and Bowers mentioned in their film, siblings tend to mature faster than children who do not have an autistic sibling. They tend to develop more compassionate qualities, and not to be as judgmental of other people.

“I’ve gained a sense of understanding and knowledge,” said King, “When I look at people, instead of asking myself, ‘what’s wrong with them?’ I ask myself, ‘how can I help them?'”

Snyder is also able to reflect on what she has gained from having a sibling on the autism spectrum.

“A lot of my compassionate tendencies really come from the fact that I’ve had my brother my whole life,” said Snyder. “Just from the fact that he’s different and it’s not his fault, and he needs to be accepted, and I try to spread that sentiment when I get the chance.”

So here we are with these siblings of autistic kids – siblings who used to not like their autistic siblings very much as kids – growing up, maturing and developing deeply compassionate qualities as well as losing the judgemental attitudes some people show. They also try to evangelise acceptance.

Seems like siblings of autistic kids turn out pretty damn well to me.

The Taft "Transition to Independent Living" program

17 Nov

Life transitions are an issue one hears about a lot with people with autism.  For young people, transitions to school, from elementary to middle school, from middle school to high school.

But, what about the transition from a school setting to an independent living situation?  What supports are available to make that transition: probably the most important transition?

A while back I heard about a program in “Taft” that targeted this exact transition.  I was somewhat surprised.  First, that there was only one program in California mentioned and, second, that this program was in Taft.  Not that I have anything against Taft, it’s just that my own prejudices made me think that such a program would be in a larger metropolitan area.  The city of Taft, California, is about 60 miles northwest of Los Angeles, in California’s central valley and is home to about 9,000 people.

The program that caught my eye is called “Transition to Independent Living” (TIL) and is hosted by Taft College, one of California’s Community Colleges.  Community colleges are 2 year schools, publicly supported.  They are great places for everyone from high school kids trying to get a jump on college credit, to older adults retraining for new jobs, and a broad spectrum of other people with various goals.

From their webpage:

The Transition to Independent Living Program (TIL) is a post-secondary experience for developmentally disabled adults emphasizing learning independent living skills.

Students are required to live in either the dorm or in a college run house.  Instruction is 5 days a week, 11am to 5pm, and a community integration program is run on weekends.  The course runs 22 months.

Instruction topics include: Meal Preparation, Money Management, Shopping, Housekeeping, Use of Appliances, Safety,  Communication, Transportation, Personal Care, and Interpersonal Relationships.

One thing I really like about this program is that people graduate.

Students are eligible for graduation when they complete the required course work and independently demonstrate the learned skills.  At that time, the TIL staff assists graduated students in transitioning into an independent living situation in their home community.  The TIL program tracks all of our graduates for a 10 year period to measure outcomes of the students and the program.

As a side-track, there is a lot of discussion in California about graduation requirements and special education students.  It is my feeling that graduation represents true accomplishment.  A “gifted” student who skates through high school and gets a diploma didn’t accomplish as much as the student who struggled for every credit.  But, that’s hard for governments to quantify, so standardized testing (CAHSEE) and other requirements are used to determine if someone graduates.  So, to repeat myself, I was much pleased to see that this program offers graduation. But, back to the main topic.

I found the program intriguing enough that I contacted Jeff Ross, Director of  Student Support Services for Taft College with some questions. I had a short list of questions–but in the end spent a long time talking to Jeff about the program. The more I heard, the more I wanted to hear.

Jeff has been with Taft College sine the 1970’s, working with people with developmental disabilities. He has worked a few positions in the area, and was instrumental in starting the TIL program.

One of the valuable assets that the Transition to Independent Living (TIL) program has is their dorms. Dormitories are not standard for community colleges. Taft College had dorms for their football program, but when sports were de-emphasized at Taft in the early 1990’s, the dorms became available for the disabilities program.

As an aside–for anyone who knows Taft even a little knows that “de-emphasizing sports”, especially football, was likely not an easy transition for the community. Taft is a big football town, and the Taft-Bakersfield rivalry is legendary.

The program is two years. The first year the students are in the dorms (about 28 students) and the second year the students are in community residences owned or leased by the college, for a total of 48 students. In dorm or the community, students each have their own single room. This is important for the students as a whole as they learn to be independent. It is important for the autistic students in that it gives them a sanctuary for private time.

I wanted to know if they thought that the location was an advantage for their program. There are some big advantages. Taft is fairly isolated, and they have good community support for the program. This helps the students be comfortable in their community. Students come to Taft from all over California. The students are truly “going away to college”. This last part is very important. The students are truly buying into the program and committing to the program. That commitment aids in their success.

There is a disadvantage to the location in that the opportunities for vocational training in the community are limited. All students work part time, some in on-campus jobs and others in community vocational programs.

I asked about other similar programs either in California or nationwide. He mentioned a program at UCLA, and that there is a national consortium of college presidents who are looking at building similar programs. But the more I heard about this program, the more I wondered why there aren’t more of them. There are some other programs, but they are not residential and many are not as comprehensive as TIL. For example, many community colleges may have a few classes, but nothing on the scale of TIL.

The TIL program is 30 hours/week of instruction with 8 hours per week of vocational training (paid employment). It is quite intensive, with community integration programs during the weekends and seven day a week staff.

One topic Jeff bought up was the fact that Community Colleges are open to all. If you are over 18 or have a high school diploma, you can attend. Many people with developmental disabilities do attend the various California Community Colleges, but without proper supports, they often are not successful.

How successful is TIL? They track graduates for 10 years. Right now, they have 142 grads of which 95% live independently and 93% are employed. I mentioned to Jeff that his screening process might be picking out those who have a better chance at gaining independence, and he was quick to correct me. Their program serves people with mild to moderate disabilities. I have no doubt that they are making a great impact on their students.

Another measure of success is in the area of the use of “supported living services”. These are services provided by the Regional Centers to help individuals with developmental disabilities stay in independent housing. One example would be banking or checking, where helping someone manage his/her budget and pay bills could make the difference in being able to stay in his/her own home. Typically, adults receiving supported living services use about 88 hours per month. Those who have been through the TIL program who use supported living services use 30 hours per month. One third of the graduates use no supported living services.

The program costs the student’s regional center about $29k/year. But, considering the numbers above, it is quite clearly cost effective on a mere dollar basis. This doesn’t even touch on the human aspects.

There is a very important word just mentioned: graduates. The students who complete the program graduate with certificates of completion similar to other vocational programs. Few (16%) ever go back for college level classes as they have that sense of completion and accomplishment that comes with graduation.

The TIL program students go through graduation ceremonies with the rest of the College. There is a second ceremony a month later, as the TIL program continues after the regular graduation date. For the last three years, the TIL valedictorian has been an autistic student.

That brings up the fact that this is an integrated program, with multiple developmental disabilities represented. I asked Jeff about this and found that in the first three years of the program they didn’t have students with autism. When they first came into the program, there was some concern about whether the program should be modified. They decided against modifying specifically for their autistic students and this turns out to have been a good decision.

As noted above, students have private rooms. This is beneficial to the autistic students in giving them a sanctuary of their own. On the other side of the coin, the mix of students and the intense program gives the autistic students models for personal relationships. The autistic students tend to lead academically, helping the other students. The non-autistic students help the autistic students on interpersonal relationships. So, the mix turns into a potential win-win for the entire group.

There is a transition specialist who helps the students integrate back into their own communities with housing and jobs after graduation.

Unfortunately, there is a 3-4 year wait list for the program, which in itself is a big indication of the need for more programs like this. Students typically start after high school transition programs–or at about age 22. Students often start touring the program at about age 16-17, with people starting to show interest in the middle-school to early high-school age ranges.

This really sounds like an amazing program. A really good idea that is making a difference. It sounds cost-effective and, more importantly, a real benefit to the students. I’ll be interested to hear what other people think of this program, but my reaction right now is: Why aren’t there more programs like this?

The TIL program has a website and a video (which I am going to try to get someone to YouTube so I can embed it here).

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