The Housing Resource Guide

New York Alliance for Inclusion & Innovation

2021

Table of Contents

Introduction (current page)
Module 1: Person-Centered Thinking
Module 2: Certified and Non-Certified Housing
Module 3: Types of Housing
Module 4: How Independent Housing is Funded
Module 5: Support Services
Module 6: Creating a Housing Plan
Module 7: Transition
Module 8: Sustaining
Module 9: Conclusion & Acknowledgments


First Published December 2012 by: Westchester Institute for Human Development
This Revised Edition published  2020 by The New York Alliance for Inclusion and Innovation
Correspondence concerning this publication should be directed to [email protected]
Suggested Citation:
Maltby, J. et al. (2021) “Housing Resource Guide” Albany, NY: New York Alliance for Inclusion and Innovation

This Guide was created to help people with Intellectual and Developmental Disabilities (I/DD) to understand the systems and options for housing. It is intended for the use of people with I/DD, their families and their Circle of Support including Care Managers, Fiscal Intermediaries, Direct Support Professionals, provider agencies and oversight agencies.

New York State is home to just under twenty million people. [1] For the purposes of this project, we estimate the number of people in the state with significant support needs, that is, people who need some level of support all day every day, to be approximately 74,000 people or .5% of the adult population. Approximately 300,000 additional adults, 2% of the adult population need less comprehensive care, across a wide spectrum of need. In this work we will refer to “Certified” housing, sometimes called “licensed” housing in other states, and “Non-Certified” housing which is less regulated and less funded. NY State currently supports approximately 38,000 people with I/DD in certified congregate and community housing throughout the state, with an additional 6,000 people receiving some assistance with housing and support in non-certified settings.

In the 40 years since the Willowbrook Consent Decree, NY State has developed an extensive group home system. The costs of labor and administration which form the bulk of operating costs in this system are funded primarily from Medicaid and Medicaid Waiver. [2] The system is comprised of state-run facilities and homes run by non-profit provider agencies sometimes called “voluntary” agencies because they are controlled by volunteer boards. Voluntary agencies cannot be compelled to provide services, and they have the right to select whom they serve. Group homes have been developed by agencies, sometimes with active family involvement, including funding, and sometimes independently. Medicaid is a medical, treatment-focused model and so given the Medicaid funding, the emphasis has been on health and safety and compliance with a significant body of regulation to govern operations and funding. Financial and programmatic transparency has been limited. This era is coming to an end. Certified settings are seen as expensive,[3] segregated, over regulated, and increasingly likely to be out of line with best practices. Federal and state reforms are pointing the way to more self-determination, personalized plans and budgets, lighter regulation, and more integrated settings. In the future, housing options will be more flexible, but the process of establishing a home will require more commitment by the people and their families and will demand more flexibility of provider agencies.

The last forty years have also seen many changes in the world of people with I/DD. Autism was not included as a diagnosis in the Diagnostic and Statistical Manual (DSM) until DSM III was published in 1980. The definition has significantly broadened over time. The overall population of the United States has increased by 50%,[4] and is expected to increase by another 35% in the next thirty years[5]. It has also been 45 years since the passage of PL 94-142 in 1975, the precursor of the Individuals with Disabilities Education Act (IDEA), and while the education system it created is not perfect, it has benefitted millions of people with disabilities and increased expectations of community integration at all stages of life. Residential settings have to address the reality of a much larger population that will expect to be more included in the community against a background of static or reduced funding.

The Guide begins with an overview of Person-centeredness. If historically the goal was to find “beds” and “slots” for people with I/DD who need Long Term Supports and Services (LTSS) the emphasis today is on the needs and wishes of the people themselves. The person must be involved to the greatest extent possible in all aspects of their housing objectives and planning. The more time and patience invested in early planning, the more sustainable the long-term housing solution will be. We discuss the creation of social capital, which in our context means the network of family friends, professionals and acquaintances that together support community participation and independence. Building social capital can provide sustainable connections that reduce reliance on system-based support. We review the income available to a person from their employment, family resources, public benefits and other sources. We review the person’s support needs, and their housing planning process and finally the best means of sustaining their housing.

Throughout the guide we will refer the reader to useful supporting material listed on the NY Housing Resource Center website in the form of printed material or recorded webinar presentations. https://youtu.be/fUxkezBiMys

Throughout the Guide we Refer to Housing Navigation;

Housing Navigation is a focused, outcome oriented, and time limited service that helps people with I/DD who need or want to move to community-based housing to obtain and maintain stable, long-term housing of their choice. Navigation services include:

  • Developing an individual housing action plan.
  • Implementing a housing action plan.
  • Finding a Home.
  • Coordinating a move.
  • Housing sustainability plan and transition to ongoing service providers.
  • Housing crisis resolution.   

 

New York Alliance, with federal Balancing Incentive Program (BIP) funds granted through the Office for People with Developmental Disabilities (OPWDD) developed a comprehensive 10-week Housing Navigator course. The course provides essential knowledge and understanding of resources required to secure housing for people with I/DD and insight into how housing is funded, developed and sustained.  Currently there are almost 300 Housing Navigators throughout New York State.

For more information on Housing Navigation access the Housing Navigator portion of the NY Housing Resource Center at https://nyhrc.org/Housing_Navigators


[1] Per the US Census Bureau 2013 report pop. 19,453,561 July 1 2019 estimate  https://www.census.gov/quickfacts/NY retrieved June 2020
[2] Medicaid Waivers allow states to use Medicaid funding to provide care in non-institutional settings. NY Has a 1915(c) waiver, for more about waivers visit the Medicaid .gov website at  https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html  retrieved June 2020
[3] The Average annual per person expenditure for ICF/IID per daily participant in NY was $184,621n 2017. (RISP report 2017, University of Minnesota 2012.) https://publications.ici.umn.edu/risp/2017/state-profiles/new-york retrieved June 2020
[4] Trading Economics https://tradingeconomics.com/united-states/population  retrieved June 2020
[5] US Population projections 2005 to 2050. https://www.pewsocialtrends.org/2008/02/11/us-population-projections-2005-2050/#:~:text=Executive%20Summary,by%20the%20Pew%20Research%20Center. Retrieved June 2020