Conclusion

Finding an affordable and desirable place to live is always a complicated business. For people with disabilities it can be made more complicated by additional needs and by the maze of eligibility and funding options that they have to navigate. New York State agencies, in particular OPWDD, are changing how they do business. What emerges will hopefully be more person-centered, fairer, more transparent and sustainable than the current certified housing model. While this change is underway, no new system resources have been created to help people to find a home. It is up to the person and their Circle of Support, including their family, their friends and their service coordinators to create and implement their housing plan.

Throughout the Guide we have referred to “independent housing” but the reality is that future housing will be “interdependent.”  People with I/DD will rely on their Circle of Support but will also connect with their peers, their employers, and all housing related professions:  bankers, real estate agents, attorneys, developers and contractors.  The housing advocacy issues for people with I/DD increasingly will have much more in common with those of people with other disabilities, people with low incomes, and older adults. It will require all of us who advocate for housing to collaborate with others rather than focusing solely on our own needs. 

At last, Money is Following the Person, but with that new freedom comes more work and more responsibility.  Although supported by law, regulation and best practices, people who have sought independent housing have nonetheless experienced frustrating obstacles. These range from the institutional bias embedded in custom and regulation, to family and provider unwillingness and trepidation when confronted with change.  We created this Guide to help people with I/DD and their families understand the issues and learn how to negotiate the path to housing. We will continue to refresh our knowledge and to work with families who set out on this sometimes intimidating but always worthwhile journey.

 


Acknowledgments

In 2012, Westchester Institute for Human Development (WIHD) was awarded a grant by the Organization for Autism Research (OAR) Applied Research program to create a Resource Guide for families seeking housing for their adult sons and daughters with Autism Spectrum Disorder and other Intellectual and Developmental Disabilities (I/DD) in Westchester County, New York.

In 2014, WIHD received additional funding through a community grant awarded by Autism Speaks to augment the original work to cover the whole state of New York

In 2018 the New York Alliance for Inclusion and Innovation received a grant from the Vivian and Peter Falco foundation to create “What Happens When I’m Gone”, an examination of how people with I/DD, their families, and advocates can establish support networks and other measures to ensure sustainable housing for individuals with I/DD as they become adults.

The creation of this guide was supported, in part, through these generous grants.

This edition, which includes additional material and considerable revision, was created under the auspices of the New York State Developmental Disabilities Planning Council and the New York Alliance for Inclusion and Innovation. There are many people to thank for the continued interest in providing accurate and up-to-date information to people with Intellectual and Developmental Disabilities and their families, advocates and people who provide support to them. Many thanks to my colleagues at the NY Alliance, Carol Napierski, Co-Director of the NY Housing Resource Center, an invaluable partner, friend and a consummate professional, Chris Liuzzo, a lifetime thought leader and advocate who created the bulk of the work on person-centeredness. Additional thanks to my NY Alliance colleagues Kate Connally, Jennifer Ivery, Desiree Loucks Baer, Susan Kittle, Katie Mayo, Lisa Mount, Kate Ng and Kirsten Sanchirico for their constant support and to Ann Hardiman and Michael Seereiter for their advice and leadership in maintaining the NY Alliance as a unique organization. I am indebted to my former WIHD colleagues Karen Edwards, Marilyn Vitale, Lucille Rossi, Nicki Turano, Aparna Tantri and Katie Borras for their invaluable insight advice and support. I am grateful to Susan Fox, Ph.D. President and Chief Executive Officer of WIHD for her support in continuing this work. NY Alliance Master Housing Navigators Seth Greenman, Hank Lobb, Derek Taylor, Theresa Manuel and Patricia Calandra have provided valuable insights from their direct experience. Lastly thanks to Ashley Greenman for her thoughtful editing and to Kate Ng for her design work.

Beth Mount Ph.D. has been the standard bearer for Person-Centeredness and Self-Determination for people with I/DD in New York for many years. I am very grateful to her for allowing us to use her brilliant quilt design as our cover.

 

John Maltby, February 2021