Autism Entrepreneurs Center Kicks Off to Overflow Group

Our Autism Entrepreneurs Center kicked off its first meeting on Jan. 10th to an overflow group of 30 people parents and their young adults with autism or Aspergers.  They had similar issues and were enthusiastic about what we plan to accomplish.  Among the attendees were individuals interested in careers as an accountant, working in computers and technical problem-solving, becoming a physical therapist, and working in the fire alarm business.  The mission of our Center is to give ASD adults the specific guidance, tools and resources they need to create, launch and run their own businesses. [MORE] [PRESS RELEASE]

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Our view of the UN Convention on the Rights of Persons with Disabilities

The US Senate is taking up the issue of ratifying the U.N.’s Convention on the Rights of Persons with Disabilities, and today’s media coverage is full of stories about the GOP opposing ratification of any treaty, including this one, during the lame duck session.  I am posting this link to the PDF of the treaty so people can read it and decide for themselves.

Rick Santorum is reportedly opposing the treaty on two provisions, one involving reproductive rights, and the other a provision that says the best interests of the child shall be a primary consideration for children with disabilities (Article 23(2 & 4), p. 16).  He, and several other groups, are concerned that this could lead to the state, and not the parents, making decisions on what is in the best interest of a child.

Article 23 actually addresses the rights of children of disabled parents, but I can see how this standard might be used in the future outside its purpose in this Article.

In our opinion, we do not believe the provisions referencing “best interests” in the UN Convention constitute a significant enough concern to delay or deny ratification of the Convention by the US, and we encourage the US Senate to pass it.

The discussion about “best interests” does cause us to revisit an issue about the rights of disabled persons in the US. I am concerned about the efforts of the State (federal or state govts and agencies) to adopt paternalistic regulations that give them rights to decide for children and adults with disabilities what they believe is in the best interests of the individual over the rights of the individuals themselves and their parents and guardians to make those decisions.

The Centers for Medicare & Medicaid Services (CMS) have been attempting to rewrite Medicaid regulations for several years to do just this, using access to Medicaid funds as a weapon to force their agenda.

In CMS’ most recent efforts, they have proposed a notion of “substituted judgment” to prevail over “best interests” in which the state could force a disabled person into a residential setting not of their choosing based on what CMS or a state agency determine that they think the individual “meant to choose.”

We believe in CHOICE in its purest form.

We are encouraged to see in the UN Convention these provisions:

Article 18 (p. 13) “State Parties shall recognize the rights of person with disabilities…to freedom to choose their residence…”

Article 19(a) (p. 13) “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”

We hope the ratification of the UN Convention by the US Senate would help provide advocates of CHOICE more tools to fight efforts by CMS and other groups to limit choice based on their own misguided paternalistic perspectives.


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Communities to Know: Cape Cod Village (MA), Bancroft Lakeside Campus (NJ)

Look under “Communities to Know” to learn about Cape Cod Village which is patterned after Sweetwater Spectrum, and Bancroft Lakeside Campus, a pedestrian community.

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LTO Ventures Community Concept Site Plan Unveiled

Concept Site Plan(click to enlarge)

Concept Site Plan
(click to enlarge)

To help people better understand what we mean by our model of a live/work/play community for adults with autism, we recently unveiled a very preliminary concept site plan.  The  plan is based on a 20-acre site (we do not yet have a location identified, but our plan is to locate our first community in the Las Vegas metro area) that provides housing and jobs for 100 adults with autism.

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Michelle L. Shappie Joins Board of Directors

We are pleased to welcome Michelle L. Shappie to the LTO Ventures Board of Directors.  Michelle is a parent of a child with autism who has enjoyed a successful 18-year career starting communities in the residential construction industry, and as a serial entrepreneur.  For 10 years, she was the Starts Manager for DR Horton, Inc., the nation’s largest builder.  She currently works with Beazer Homes.  She has started two companies: one a consultancy in building code and compliance management services; and, the other specializing in custom document archive services for mega-resort and high-rise properties.

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LTO Ventures Responds to Centers for Medicare & Medicaid Services

LTO Ventures has submitted its public comment in response to The Centers for Medicare & Medicaid Services (“CMS”) Notice of Proposed Rulemaking CMS-2249-P2.  Read the full text of our 18-page comment letter here.  We strongly oppose CMS’ latest attempt to narrow the definition of a home and community-based setting, and thus reduce the amount and variety of housing available.  We believe that individuals with Autism Spectrum Disorder and other developmental and intellectual disabilities have the right to live in the residential setting of their choosing, and to receive the services they need in that setting whether or not those services are funded by Medicaid, the primary financial safety net for persons with disabilities.  We encourage anyone who shares our view to share our comment letter.

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Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S.

Autism Speaks announced on March 28, 2012 preliminary results of new research that estimates autism costs U.S. society a staggering $126 billion per year – a number that has more than tripled since 2006. The costs of providing care for each person with autism affected by intellectual disability through his or her lifespan are $2.3 million in the U.S. and the lifetime costs of caring for individuals who are not impacted by intellectual disability are $1.4 million.  Read the full story here.

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CMS Makes Another Run at Denying Choice

On May 3, 2012 the Centers for Medicare & Medicaid Services (CMS) posted a Notice of Proposed Rulemaking — Federal Register, May 3, 2012, CMS-2249-P2 — that includes another significant effort to define “home- and community-based settings” in a way that expressly denies choice.  See our analysis of the previous effort Choice v. Olmstead.  The NPRM invites public comment.  The deadline for submitting comments is July 2, 2012, not June 4 as originally posted (see correction notice).  We will be providing comment which we will again publish here.  We urge anyone with an interest in this issue and a desire to make your voice heard to read the Federal Register, May 3, 2012, CMS-2249-P2 and submit your comments according to the submission criteria.
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LTO Ventures at Agricultural Communities for Adults with Autism Summit, May 3-5

We are pleased t0 be participating as a member on May 3-5 in the 1st Annual Summit of the Agricultural Communities for Adults with Autism (ACAA) at Bittersweet Farms in Whitehouse, OH. [MORE]  UPDATE (5/8): It was a fantastic gathering of current and prospective providers doing great work and innovating solutions.  We’ll post a full report in a few days, and update our “Communities to Know” section.

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Jessica E. Campbell Joins Board of Directors

We are pleased to welcome Jessica E. Campbell to the LTO Ventures Board of Directors.  Jessica is a board certified behavior analyst that specializes in applied behavior analysis and autism spectrum disorders.  She provides behavior therapy, social skills programs, parent training, and IEP consultation for families affected by autism through her practice, Campbell Center for Autism in Las Vegas.  Additionally, as a sister of an adult living with an intellectual and physical disability Jessica has much compassion, respect and understanding for people with special needs, as well as their family members.

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