Tom Paxton,  a voice of his generation, addressing issues of injustice and inhumanity and celebrating the tenderest bonds of family, friends, and community will join the stellar line up of musicians featuring legendary artist Noel Paul Stookey, of former Peter Paul & Mary fame, who has been altering the musical and ethical landscapes of the world for decades.  Appearing with him are singer-songwriter Christine Lavin, Buskin & Batteau, called the most sophisticated music act in folk, and contemporary Christian artist Mack Bailey. 

 

Proceeds of the concert will benefit Madison House Autism Foundation, working to improve quality of life and opportunities for adults with autism. According to WFMA, this is the first time that a majority of proceeds will benefit another organization and the event will feature just four top artists so that the audience can appreciate more music from each musician.

Click here to purchase online tickets.

Fans who want to mingle with the musicians can also purchase reception tickets, available in limited number. A silent auction and outright sale of artwork from autistic adults will take place at the concert.  To learn more about the musicians, visit wfma.net. To see more about the challenges faced by adults with autism and their families, visit madisonhouseautism.org or call at 301-330-8532

Painting by Dashir Johnson available at the silent auction.

For additional information please contact Lucy Lopez at 240-441-9714

Madison House Autism Foundation and Purple Cherry Architects hosted Spectrum of Possibilities: Decreasing Barriers – Increasing Options on May 1 with experts from across the nation at Johns Hopkins University School of Education -Montgomery County Campus in Rockville, MD.  Many organizations were there  to join the conversation about how to develop practical solutions and create workable, livable, and affordable housing for autistic adults.

Here are links of participating organizations:

A Splint

Autism Housing Pathways

CSAAC

FRED Conferences, a Golden Heart Ranch Production

Golden Heart Ranch

Humanim

Hussman Foundation

Langton Green, Inc.

LTO Ventures

Madison House Autism Foundation

Noah’s Ark of Central Florida

Promise in Brevard

Purposeful Architecture

The Center for Discovery

Vine Village, Inc.

According to JaLynn Prince, President of Madison House Autism Foundation, the vast majority of adults with autism will live at home, often in isolation, until their parents die or can no longer care for them.  “It doesn’t have to be this way,” she explains.  “Our goal for this conference was to walk away with a clear action plan addressing policy at state and federal levels, aimed at reducing barriers and increasing flexible, appropriate housing options.”  

Cathy Purple Cherry, Principal of Purposeful Architecture /Purple Cherry Architects, noted “There are many innovative models being developed across the nation to offer these individuals choices in housing that best suits their needs and desires.  Our goal is to change federal and state policies to allow individuals to use their funding in any of these housing options.”

Using the Autism Housing Network (AHN) – an online community that will be launched in the next few weeks – participants will build on the best ideas and continue work together in a meaningful way.

Purposeful Architecture® is a studio within Purple Cherry Architects committed to creating spaces that foster thoughtful learning and living environments and inspire creativity and individuality in our children and adults with special needs.  For more information, visit www.purposefularchitecture.com.

Madison House Autism Foundation is a public 501 c 3 non-profit organization working to eliminate barriers and increase opportunities for the rapidly growing numbers of adults with autism.  Its immediate priority is to address the near total lack of flexible housing options for autistics and its programs and philosophy are based on the belief that sustainable, replicable solutions must engage all sectors including public and private sectors, non-profits, families and advocates.  For more information or to volunteer, visit www.madisonhouseautism.org .

]]> http://www.madisonhouseautism.org/autism-housing-roundtable-brings-national-experts-together-to-increase-possibilities-decrease-barriers-to-housing/feed/ 0 http://www.madisonhouseautism.org/desis-desk-social-return-on-investment-sroi-in-florida-advocacy/ http://www.madisonhouseautism.org/desis-desk-social-return-on-investment-sroi-in-florida-advocacy/#comments Mon, 13 May 2013 21:42:11 +0000 amcbride http://www.madisonhouseautism.org/?p=2063

Sunny south Florida is my hometown and where my passionate journey into the world of autism started in high school as a volunteer for a local YMCA special needs program. Fast forward eight years and a master’s degree later, it is time to come home and connect with those who helped form me into the person I am today.

I write this article for two reasons:

• To share some of the specific and broad barriers to housing in Florida, seeking feedback from those in other states.
• To tell a bit of how I came to be the creator of the Autism Housing Network with the hope that others will invest in future leaders of the field.

The University of Miami-Nova Southeastern Center for Autism and Related Disabilities (UM-NSU CARD) is one of the founding members of a national coalition called Advancing Futures for Adults with Autism, which Madison House Autism Foundation also joined in 2010. They serve thousands of individuals and families across south Florida, I know because my first job at UM NSU-CARD was a data entry position! It had been four years since I last saw Deborah Chin, now the Coordinator of Adult and Transition Services, and our meeting was as if we had not skipped a beat.

The following is some of the information Deborah shared about housing in south Florida and is eager to know if these trends are also present in other states:

• The National Residential Information Systems Project, a government-sponsored report, which is prepared by a University Center for Excellence in Developmental Disabilities (UCEDD) authorized under Public Law 106-402 (The Developmental Disabilities Assistance and Bill of Rights Act of 2000 or “DD Act”), has been tracking residential data since 1977.  Its most recent findings in 2012 include an estimated total of 3,835 people with developmental disabilities (including autism) on a waitlist for residential services in Florida and that almost a 25% increase is needed to meet the current need. (Note: This does not include those who can try to find affordable housing vouchers and use their HCBS waivers for services.) Deborah confirmed this finding.  She also believes that there are many more individuals with an autism spectrum diagnosis who are in need of housing and are not be eligible for the residential services or HCBS of which thousands are already wait-listed!
• Keeping in mind current the waitlist for needed housing, Deborah said that although many residential providers have empty beds, funding is unavailable. I decided to investigate exactly how much funding is being allotted to meet the increasing need for lifelong services and according to another government sponsored report produced by a UCEDD called the State of States in Developmental Disabilities came to find out since 2007 funding in Florida has decreased. 
• Some autistic adults who desire to live independently could do so if transitional housing options were more readily available or if they could be paired with neurotypical roommates who could offer support and assistance when needed. Deborah mentioned she had tried to contact Mental Health services for those individuals who are also diagnosed with a mental health disorder to see if mental health service providers had availability in transitional housing opportunities. Apparently, if an individual has an autism diagnosis, he (or she) needs to be served by developmental disability service providers. Some individuals on the spectrum in south Florida are now living in nursing homes because no other options are available.
• Deborah also described the plight of boredom and frustration for autistic adults as lack of opportunity and support makes it difficult to secure jobs, find friendship, and navigate the world outside of their family unit.

The limited housing options and support services for autistic adults is not a new trend. Almost every state in the USA does not have the funding to provide for the current, not to mention, the future needs of autistic adults and others with developmental disabilities. Meeting K and M, both autistic adults working at UM-NSU CARD when I started, set a certain standard in my heart for what possibilities as the life as an autistic adult would be.  It wasn’t until later that I realized their quality of life was not the norm… but I am still naive enough to think it could be!

Desiree and Canes PLUS participants in 2008.

As evidence on a high social return on investment, I come back to south Florida as a consultant, eager to offer knowledge and tools that I have developed for community organizing and creating homes and opportunities for autistic adults. If you only take away two things from this blog post let it be: invest in student leadership and advocate for more choices in residential options!

The faces of Canes PLUS participants, the program I started with a grant written by UM-NSU CARD, are no longer teeny boppers- they are now adults. I am excited to soon see them again!  Together, and with help from our friends nationally through the Autism Housing Network, we will create better options for the future of autistic adults here in south FL!

PS  I am facilitating a workshop on innovative housing ideas for the local AFAA group on Thursday, May 16, 2013 at the University of Miami.   To register, click here.

]]> http://www.madisonhouseautism.org/desis-desk-social-return-on-investment-sroi-in-florida-advocacy/feed/ 0 http://www.madisonhouseautism.org/environment-matters-workshop-debriefing/ http://www.madisonhouseautism.org/environment-matters-workshop-debriefing/#comments Wed, 08 May 2013 20:25:01 +0000 amcbride http://www.madisonhouseautism.org/?p=2116 On Monday, we attended a workshop on “Environment Matters”, which was presented by George Braddock.  Mr. Braddock’s philosophy is that difference between a problem behavior and a preferred activity are negative consequences.  He explained that a person-centered approach is the best way to engineering independence and supports his beliefs with Maslow’s Hierarchy of Needs Pyramid.   The physical environment where one breathes, eats, sleeps, baths and excretes is the basis for safety, love and belonging, esteem and ultimately self-actualization … this is the basis for a purposeful life.  His work is guided by the principles that if an environment doesn’t work, it is not the person with the disability fault and moreover, you cannot fix a problem behavior in a broken environment.

George reviewed what works and doesn’t work in housing situations.  His values and assumptions, which guide his work and he listed at the workshop, include:

1. People with ASD have the ability and right to live in community and with their families.

2. The unique and enduring relationship of a family must be respected. 3

. Families are committed to supporting and enriching the life of a person with ASD.

4. People with ASD can participate in the activities of daily living, including caring for themselves.

5. The environment should offer meaningful opportunities for a person to make decisions and exercise choice.

6. The unique interests and activities that bring joy and happiness to a person with ASD should be facilitated.

7. When the environment doesn’t work, it is not the person’s fault.

Braddock addressed and gave examples of environmental assessment +action plan and other questionnaires. This is not a substitute for holistic planning and should be used in conjunction with other person centered planning processes.  Here are 5 steps:

1. Identify the challenges you face every day in the home as a caregiver.
2. Involve the individual.
3. Assess the home and identify what isn’t working.
4. Lean about common home modifications and strategies for specific challenges.
5. Make an Action plan that is appropriate to your unique situation and circumstance.

We also spent time reviewing the six most common home modifications, why these modifications are and why they work. Most important, he provided specific real life examples.  He also addressed specific challenges from elopement to angry neighbors.  You can find more information here in his publication.

Workshop information

This training is part of a series to assist in addressing some of the concerns raised by the Maryland Commission on Autism (Commission). Through the Commission activities, individuals with autism spectrum disorders (ASD), families, and professionals from across the state noted that quality training for the adult provider system would enhance the services currently available in Maryland. To address this need, the Maryland Developmental Disabilities Administration (DDA) has allocated funding for fiscal year 2013 to provide specialized training to increase the availability of quality services for people with ASD. The series, coordinated by the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, will provide both basic and “nuts and bolts” information geared toward enhancing the service provider system’s capacity to support adults with ASD.

About the speaker

George Braddock pioneered the implementation of person-centered planning principles to homes for people with disabilities. In his 25 years as a licensed general contractor and housing consultant, he has been involved in more than 1,500 projects guided by these principles. Creative Housing Solutions, LLC was established so the knowledge and expertise gained from this significant work would be utilized elsewhere and continue to be improved upon. Work has been provided to families, provider agencies, non-profit housing organizations and governments. In addition to design and construction, his company has provided maintenance and repair services spanning decades on some projects. Mr. Braddock provides trainings, conducts workshops and presents at conferences introducing professionals, individuals, families and advocates to the critical role of the physical environment in shifting the balance for persons with developmental disabilities towards choice, control and participation in their homes.

Let’s support their efforts this Mothers Day (not to mention other holidays!) and show the quality products autistic adults are proud to offer. Here are a couple options to start with, please share more in the comment section!

PS If you are in the DC-Metro area, tickets are still available for the World Folk Music Association benefit concert and Arts for Autism event!

Flowers from Roses for Autism in CT

Home Decor from Brookwood in TX

Sweets from Lambs Farm in IL

Art by Vine Village in CA

DC area folk music fans are in for a rare treat June 1 when the World Folk Music Association brings four of its most favorite folk music artists to perform at the Clarice Smith Performing Arts Center at the University of Maryland, College Park.  The Concert will feature legendary artist Noel Paul Stookey, of former Peter Paul & Mary fame, who has been altering the musical and ethical landscapes of the world for decades.  Appearing with him are singer-songwriter Christine Lavin, Buskin & Batteau, called the most sophisticated music act in folk, and contemporary Christian artist Mack Bailey.

Proceeds of the concert will benefit Madison House Autism Foundation, working to improve quality of life and opportunities for adults with autism. According to WFMA, this is the first time that a majority of proceeds will benefit another organization and the event will feature just four top artists so that the audience can appreciate more music from each musician.

Click here to purchase online tickets.

Fans who want to mingle with the musicians can also purchase reception tickets, available in limited number. A silent auction and outright sale of artwork from autistic adults will take place at the concert.  To learn more about the musicians, visit wfma.net. To see more about the challenges faced by adults with autism and their families, visit madisonhouseautism.org or call at 301-330-8532

Painting by Dashir Johnson available at the silent auction.

For additional information please contact Lucy Lopez at 240-441-9714

Last week  JaLynn Prince, President of Madison House Autism Foundation was a guest on Montgomery Week in Review to discuss issues that face autistic adults and their families.   What a lively conversation with a diverse panel and guests!  From left to right:

Don Mooers (far left), host,  a recognized expert in immigration and nationality law. He has helped clients achieve success in all aspects of employment-based and family-related immigration law and complex naturalization and citizenship matters. He advises and represents clients on immigration matters before the Departments of Labor, Homeland Security and State. He is a popular speaker and frequently provides expert advice on immigration law and policy for Congress, media outlets and national organizations.

Greg Wims(second to left), founder of Victims Rights Foundation,  a man with a long volunteer career and a burning desire to bring comfort and aid to those in need. In the last 43 years he has raised more than 2 million dollars, logged more than 1 million miles and volunteered more than 42,000 hours on community service projects.

Graciela Rivera-Oven (third on right)has broad experience working with multi-cultural groups in the Washington area. Grace is a public relations consultant, newspaper columnist and Co-producer of the weekly TV show Revista Semanal Montgomery as well as a fellow classmate in Leadership Montgomery with JaLynn.

Aaron Overton (far right), CEO of Heatherstone  provides software, database, management, and search engine marketing consulting services to businesses and professionals who prefer innovation to infrastructure.

1.  Q: Please explain a little bit about your current living arrangement and supports. 

   A: I received HCBS (Medwaiver) funding, which in Florida is not necessarily good. The state does not provide enough community support or allows us real choices. But I am lucky that I have friends who are my life sharing partners. They own a house but it is OUR home. The funding I receive pays for my expenses and my share as a roommate. They support me with all I need. They make sure I can have the life I aspire to and they are happy doing what they do, because that’s what they want for their lives. It is a perfect situation. They respect my choices and goals and I have a pretty good life.Every time the government cuts funding, we have to make adjustments because the other option I would have is living in a group home and doing whatever the staff says, and without any access to my method of communication.Our home is available for more roommates but, again, the state of Florida has rules that make everything very difficult to be accomplished.

2.  Q: What has been the biggest barrier/s to finding your home?

   A: Because my friends and I had already decided about our goals, this part was easy. We had done life sharing at another state and the model was the same. Dealing with state agencies and funding is the hard part because, in the case of Florida, they are not open to new initiatives if a person receives HCBS (Home and Community Based Services) funding. Again, my friends are dedicated and they make sure I can have my own choices.Some states – and some people – have a very healthy approach to the idea.

3.  Q: What were the most important elements when choosing your support service provider and/or staff? Did you have many options? 

   A:My friends and I met a long time ago, and we had the life sharing experience, so it was easy to decide which supports I would need. Options are hard to find where I currently live and we have to be creative and make things happen in a way that I can at least try to accomplish my goals.

4. Q: Many parents fear that there are not enough options and availability of funding for the future support needs of their son/daughter. In response, they have started to create self-sustainable (through microenterprise) and private-pay (for those who have the financial capacity to do so) intentionally planned communities, similar to CoHousing or Eco-Villages. Some are neurodiverse, and others only provide residential options to those on the spectrum or I/DD. There has been criticism by some that these communities are segregating. In your opinion, what makes a person feel ‘segregated’? What advice and/or suggestions would you like to give to these parents? 

   A: When options are not many, it becomes tempting to settle for less. One of my concerns is that, in the name of safety, closed communities might become unsafe, unseen. I went to a segregated boarding “special” school and I can say that abuse and cover up do happen.The idea of sharing a house, making it a home, is a good one. It does not have to be in a closed community. It can mean several houses spread throughout the town or city or county. Besides, non-disabled people will only be educated if we are living among them. Acceptance. Belonging.

5.  Q: Do you have any advice for young autistic adults who are transitioning to life on their own?

   A:  Know your rights and fight for them. Even if you need help, even if you need a lot of help…this is not what defines your worth. You are worthy and valued and as an adult things might seem harder. Sometimes they are. But if you know your rights, you can fight to have the supports you need. Maybe you want to join a self-advocacy group, or create your own activism group. There are lots of very active autistic advocates who are ready to embrace any Autistic who is a proud one.

Amy Sequenzia blogs regularly for Ollibean and the Autism Women’s Network. Her writing from the perspective of a non-vocal autistic adult is important to read and understand.

More information about life sharing:

Intentional Community: http://www.cadmuslife.org/

Article/Story: http://www.oclinc.org/life_sharing/life_sharing.htm

Service Provider: http://www.skillsofcentralpa.org/public/services/lifesharing.php

Service Provider: http://www.developmentalprogramsphilly.org/life-sharing-through-family-living.php

On June 1, 2013, World Folk Music Association (WFMA) will host a benefit concert at the Clarice Smith Performing Arts Center on the campus of the University of Maryland in College Park. Madison House Autism Foundation is honored to be the beneficiary of WFMA concert  and to curate a silent auction to raise funds for its programming by featuring art with connection to autistic adults.  We are working with autistic artists in this endeavor to raise awareness and funds for our programs. For more information about the silent auction or concert, contact Lucy at Madison House Autism Foundation and for information about tickets sales, please visit World Folk Music Association.  

We are looking forward to seeing  you!