This guide provides easy-to-understand information, advice and guidance about community housing and supportive services. This housing guide was designed specifically for individuals with disabilities and their families with a concentration on those with intellectual and developmental disabilities.
1122
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
The Journey to Community Housing with Supports
A Road Map for Individuals and Their Families in New Jersey
12
Acknowledgements
www.shanj.org The Supportive Housing Association of New Jersey (SHA) is a statewide, nonprofit membership organization, founded in 1998, whose mission is to promote and maintain a strong supportive housing industry in New Jersey serving people with special needs. SHA engages in education, advocacy and networking for and on behalf of its over 100 members.
The Power of Connection
WWWAUTISMNJORG
Autism New Jersey is a nonprofit agency committed to ensuring safe and fulfilling lives for individuals with autism, their families, and the professionals who support them. Through awareness, credible information, education, and public policy initiatives, Autism New Jersey leads the way to lifelong individualized services provided with skill and compassion. We recognize the autism community’s many contributions to society and work to enhance their resilience, abilities and quality of life.
The Supportive Housing Association of New Jersey expresses its deepest gratitude to the New Jersey Council on Developmental Disabilities for the grant funding to develop The Journey to CommunityHousing with Supports: A Road Map for Individuals and Their Families in New Jersey.
About Reprints We encourage individuals and organizations to freely utilize and share the information from this SHA publication. Please credit SHA as the source of this information. Reproduction permission requests will be considered on a case-by-case basis; please forward these requests to SHA. -ARCH &IRST %DITION s 3UPPORTIVE (OUSING !SSOCIATION OF .* s 3(! s www.shanj.org October 2016; First Edition, Second Printing, April 2017; Second Edition
13 1
HOUSING OPTIONS WITH INNOVATIVE ELEMENTS THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
$EAR 2EADERS Welcome! This housing guide, entitled The Journey to Community Housing with Support: A Road Map for Individuals and Their Families In New Jersey, has been designed specifically for individuals with disabilities and their families, providing information, advice and guidance about community housing and supports. Funded by the New Jersey Council on Developmental Disabilities, it is written to inspire individuals with intellectual/developmental disabilities and their families about the possibilities. Navigating the many complex systems, each with detailed regulations, is challenging. This document can assist you or your loved one in finding your way. This guide recognizes the obstacles associated with securing housing and supports. There is a need for additional affordable housing units, rental subsidies, mainstream resources and funding for supportive services. This housing guide should be read in keeping with its title, as a journey toward establishing a home that enables you or your loved one to live as independently as possible. Written for the layperson, the guide summarizes housing models through the experiences of individuals and families, providing suggestions for your unique housing needs. We must be candid: there are many barriers, and creative thinking, planning, perseverance and advocacy are required. While much of the information is specific to New Jersey and individuals with developmental disabilities, housing with supportive services encompasses many common features. The funding streams, opportunities and obstacles described can benefit people with other special housing needs and those from other states. The content also has value for providers, public officials and advocates. We are grateful to many people who contributed to the development of this important resource. The New Jersey Council on Developmental Disabilities recognized the need for this guide, offered critical input, and generously provided grant funding for its development and dissemination. Grant partner, Autism New Jersey, offered substantial conceptual and practical contributions to the text based on their publication entitled, New Jersey Housing Resource Guide for Adults with Autism Spectrum Disorders (2009) and their community’s experiences to date. Many professionals and state officials provided their expertise, and we are grateful for their input. Deborah Wehrlen, consultant to this project, invested countless hours researching and writing this guide. She translated complex subject matter into understandable prose. Most importantly, we appreciate the individuals and their families who candidly shared their personal journeys so that others could benefit from their experiences. As part of your journey I encourage you to familiarize yourself with the many SHA members - developers and supportive services providers - who offer community housing with supports. For more information visit WWWSHANJORGMEMBERSMEMBERS DIRECTORY On behalf of the Supportive Housing Association of NJ, I wish you a successful journey. This booklet will continue to evolve in its content and presentation; therefore, I encourage you to contact us with feedback, recommendations and additional ideas. 4HERE IS NO PLACE LIKE HOME
Gail Levinson Executive Director Supportive Housing Association of NJ (SHA)
www.shanj.org
12 2
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
0LEASE REFER TO ONLINE COMPANION lLE FOR The Journey to Community Housing with Supports: A Road Map for Individuals and Their Families in New Jersey TO EASILY ACCESS LIVE LINKS AND ADDITIONAL RESOURCES . WWWAUTISMNJORG(OUSING3(!'UIDE
What is Supportive Housing? Supportive housing is permanent, affordable, lease-based housing for people of low income with access to flexible supportive services. Supportive housing is designed for people with special needs including those with mental, physical and developmental disabilities as well as people who are homeless. Supportive housing provides a safe, affordable home with access to support services so that individuals can live as independently as possible in communities of their choice. Supportive housing can be found in a variety of settings, in different constellations, and may include scattered site apartments, individual apartments, shared apartments as well as (more rarely) home ownership. Some supportive housing exists in affordable housing complexes that are often integrated with non-disabled individuals/families. Supportive services can vary but often include case management, care coordination, job and education coaching, assistance with daily living skills, transportation assistance, access to public entitlements and crisis intervention.
3
A ROAD MAP FOR INDIVIDUALS AND THEIR FAMILIES IN NEW JERSEY
Table of Contents
1) Welcome ..............................................................................................................................................1 2) Navigating the Systems .....................................................................................................................4 3) A Brief History of Housing .................................................................................................................5 4) Housing Options with Innovative Supports .....................................................................................6 a) Supportive Living ............................................................................................................................7 b) Shared Living ................................................................................................................................11 c) Support Families ...........................................................................................................................14 d) Group Homes ...............................................................................................................................15 e) Intensive Specialized Group Home ................................................................................................15 f) “Housing First” Concept ..............................................................................................................17 g) Supportive Housing Models ..........................................................................................................18 h) Living with Family and Receiving In-Home Supports ......................................................................19 i) Accessory Apartments and Tiny Houses ........................................................................................21 j) Intentional Community Models.....................................................................................................22 k) Community Cooperatives ............................................................................................................. l) Secure Communities..................................................................................................................... 5) Funding Sources ................................................................................................................................24 a) Medicaid HCBS Waivers................................................................................................................24 b) New Jersey Department of Human Services (DHS).........................................................................24 i) New Jersey Division of Developmental Disabilities (DDD)........................................................26 ii) DDD Eligibility .......................................................................................................................26 c) Services funded through Medicaid Waivers ...................................................................................28 i) NJ Comprehensive Assessment Tool (NJCAT) ..........................................................................29 d) State Plan Services ........................................................................................................................ i) Personal Preference Programs................................................................................................ ii) Personal Assistance Programs ................................................................................................ e) New Jersey Statewide Transition Plan ............................................................................................ f) Other Governmental Agencies...................................................................................................... g) Assuring Quality ........................................................................................................................... 6) Finding Affordable Housing ............................................................................................................. a) Rental Subsidies............................................................................................................................40 b) Federal Housing Choices Vouchers and NJ State Rental Assistance Program (NJSRAP) ...................41 c) Affordable Housing Funded by Tax Credits....................................................................................42 d) Rental Resources ..........................................................................................................................42 e) Ownership Resources ................................................................................................................... f) Private Resources ..........................................................................................................................44 g) Quality Monitoring ......................................................................................................................45 h) Mainstream Resources ..................................................................................................................46 i) Housing Development ..................................................................................................................52 j) Advocacy......................................................................................................................................56 7) Bibliography ......................................................................................................................................58 8) Appendix ...........................................................................................................................................59
12 4
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
Navigating the Systems
Systems of support for long-term care are changing. In the past, individuals’ options were limited to placements in group homes or supervised apartments. While these residential settings continue to exist for those with more intensive support needs, options have and will continue to expand. Today, housing and services are being separated or “unbundled.” Individuals, working with individual budgets, select providers and direct the services that they choose. Increasingly individuals with disabilities, by themselves or through their guardians, are controlling their own housing options and services and living in more community-integrated settings. This is called supportive housing.
There is a tremendous need for residential support as well as housing that is affordable. It is likely that funding for these expenses will come from multiple sources. Given the limitations of government resources, individuals with disabilities need to access mainstream resources that are available to anyone with low income in order to live within their budgets. These mainstream resources, described in the guide, include such things as rental subsidies, food stamps and utility assistance. In most states, including New Jersey, there is no entitlement to residential services. States establish the number of people that they will serve based upon available state appropriations and available federal funding. Regulations define the means to access and maintain such benefits. Supportive housing involves interconnected elements. There must be a readily available supply of affordable housing units. Funds, usually from several government sources, provide the individual with the supports necessary, based upon the person’s level of need. The individual’s personal income from social security and earnings pays for room and board, which may be supplemented by rental assistance or some form of housing subsidy. Many housing models exist and some are described in this guide. Through person-centered planning, the person designs where and with whom he or she wants to live. Working within the scope of an individual budget, it may be a challenge to use the available dollars to cover all of the expenses. The person can select multiple providers or a single entity to address all of one’s needs. For some, technological advances can supplement for assistance previously supplied by direct support personnel. Note: The authors did not vet the quality of service delivery in each of the models described. All individual names and some details about their lives have been altered to protect their
privacy. The authors of this guide made every effort to accurately and completely describe appropriate residential arrangements and services for individuals with a broad range of abilities and needs. We have strived to capture this range in the examples of models and description of individuals in their homes. The intensity of staff support can vary within each model. Multiple funding sources are also described. Each funding source has its own eligibility criteria and regulations. However, services in some models described may not be eligible for public funding, if determined by the state to be congregate in nature or at variance with state or federal regulations. The systems of funding are in transition and corresponding regulations are changing. To obtain the most current information, check the internet links provided. With an understanding of these requirements and some “out of the box” thinking, you can develop an individualized plan to fit within the funding structure. We hope that you use this guide to find models and elements of these models that may be a match for you or your loved one. We welcome your feedback to improve future editions of this guide. We hope that this guide will help individuals and their families as they navigate the road to supported living. Sometimes traveling to a new place can be scary as well as enjoyable. We hope this guide will help you and your loved one to find your way. Note: The authors of this guide made every effort to accurately and completely describe appropriate residential arrangements and services for individuals with a broad range of abilities and needs. We have strived to capture this range in the examples of models and description of individuals in their homes. The intensity of staff support can vary within each model. The authors did not vet the quality of service delivery in each of the models described. All individual names and some details about their lives have been altered to protect their privacy. This guide provides information best known at the time of publication. Much system change is in process and consequently regulations are changing. Refer to the websites for the most up-to-date information.
5
A BRIEF HISTORY OF SUPPORTIVE HOUSING
A Brief History of Supportive Housing
For almost 40 years, residential services provided in the community have been the preferred residential option rather than living within large institutional settings. The trends have increasingly supported smaller and more personalized settings while living as independently as possible with assistance. In 1999, the U.S. Supreme Court affirmed in the Olmstead v. L.C decision that as established in the Americans with Disabilities Act (ADA), people could not be required to live in institutional settings if a less restrictive alternative could meet their needs.
According to the University of Colorado’s State of the States in Developmental Disabilities Project, New Jersey was one of six states in the country operating the largest number of state- RUN INSTITUTIONS "RADDOCK 4HE 2ESEARCH AND 4RAINING Center of Community Living at the University of Minnesota has several publications that review the research studies regarding individuals with intellectual/developmental disabilities (I/DD) living meaningful lives in their communities. In New Jersey, educational efforts prepare individuals leaving institutional settings for community living by talking with peers who have successfully completed such transitions. New Jersey has made progress to increase opportunities to live in communities and reduce the number of people living in state-operated developmental centers and psychiatric hospitals. This is a welcome trend from both quality of life and financial perspectives. A research brief on costs and outcomes of community services for individuals with intellectual and developmental disabilities revealed that the cost of institutional care far exceeds that of supplying similar supports within community settings (Stancliffe & Lakin, 2004). States typically spend significantly more money supporting institutions and community residences than they provide to family support services. Yet, most individuals receiving services live in their family home. Fortunately, a shift is underway across the country to provide families with more funding and the flexibility to utilize resources as they see fit. Individuals and their families, given more control through individual-directed services with individual budgets, are better satisfied with the services that THEY RECEIVE ,AKIN ET AL
THE IMPACT OF THE 1999 OLMSTEAD SUPREME COURT DECISION In a landmark interpretation of the Americans with Disabilities Act (ADA), the Supreme Court decided that people with disabilities have a right to receive care in the most integrated setting. Unnecessary institutionalization violates the ADA. Every state is implementing plans to meet the mandates of this Olmstead decision. People living in developmental centers who choose to leave are transitioning into community placements. A lawsuit settlement between Disability Rights New Jersey and the NJ Department of Human Services mandates that anyone who meets the Olmstead criteria (initially estimated to be 600 residents) must move from the state’s (then) seven institutional facilities into integrated settings by 2017 to comply with the Supreme Court’s decision. For more information visit WWWNJGOV HUMANSERVICESDDDPROGRAMSOLMSTEADOIPACHTML . The Centers for Medicaid and Medicare Services (CMS) permit states to re-direct funding for institutional care to serve people in the most integrated settings in the community through the process of a “waiver.” To date, the state has transitioned individuals from developmental centers each year into homes in the community thereby meeting the state’s legal obligation. For more information visit WWWSTATENJUSHUMANSERVICESDDDDOCUMENTS $OCUMENTSFOR7EB$2.*V6ELEZ )) 3ETTLEMENT!GREEMENTPDF
612
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
Housing Options with Innovative Elements When asked about residential models, one progressive state official said, “We have 568 people and 568 models.” This statement articulates the obvious fact that each person is unique. “No one size fits all.” An individual’s dreams are realized in various ways. The personally designed models depicted in this guide may or may not precisely meet someone else’s needs. The purpose of describing these varied concepts in housing and supports is to inspire others to consider these ideas and redesign them to meet their own specific desires and circumstances. New Jersey is continuing on its journey to implement innovative models in housing and services.
7
HOUSING OPTIONS WITH INNOVATIVE ELEMENTS
3UPPORTIVE ,IVING -ODELS
YOUR DESTINATION/ MANY ROADS CAN TAKE YOU THERE The map key: terminology Agency-directed services - The individual selects an agency that is responsible for supplying residential or vocational programs, such as a group home placement. Congregate housing refers to living situations where a group of unrelated individuals with disabilities live together, such as in a group home. Integrated housing refers to the opportunity to live in typical mainstream settings with opportunities to interact with people who do not have disabilities. Bundled and unbundled services refer to how services are delivered. With bundled services a package of supports are provided by one service provider usually through a program such as a group home. With unbundled services, a person obtains individually selected supports and services from one or more service providers. For example, one provider may supply individual supports while another agency delivers transportation. As systems are changing, most services will be unbundled and paid for through a fee for that service. Support Coordination is a funded service that assists individuals in gaining access to needed program and state plan services, as well as needed medical, social, educational and other services. All individuals who are eligible and wish to access Division- funded services must either select or be assigned to a Support Coordination Agency (SCA). For more information visit WWWSTATENJUSHUMANSERVICES DDDSERVICESSUPPORT?COORDINATION HTML
This guide provides an array of housing models and supports utilized by people with disabilities. Many of the models contain best practice elements of supportive housing, a philosophy that calls for permanent, affordable housing for people with disabilities in communities of their choice. Supportive housing advocates that everyone is entitled to a safe, decent place to live and should receive the services unique to their needs that will help them to live as independently and as self sufficiently as possible. Housing should promote the development of relationships among people with and without disabilities. There should also be a separation between the provision of housing and services. People should be able to move and not lose their service provider. Similarly, someone should be able to change his or her service provider and not be required to move. The landlord should not also be someone’s social worker. The individual has control of his/her housing through a landlord/tenant lease with the property owner. Skilled providers in various areas, including case management, care coordination, job coaching, crisis management, acquiring skills in daily living and much more, deliver these social services. The individual chooses the service provider to deliver supports flexibly and according to one’s unique needs. Supportive housing operates in a variety of settings, in different constellations and may include apartments, houses, townhouses, condominiums, shared housing as well as (more rarely) home ownership. Some supportive housing exists in affordable housing projects that are integrated with non- disabled individuals and families. Supportive housing is an approach to community living that is receiving much attention and implementation nationwide, including in New Jersey. Other housing models are also delineated in this guide as part of the continuum of housing options. These settings generally provide more congregate housing or housing intentionally created exclusively for people with disabilities. While these models are not considered supportive housing, they continue to be used by persons with disabilities, and are described herein. Group homes serving more than four individuals and campus style housing that offers apartment/condos exclusively for individuals with disabilities may be considered institutional in nature and individuals may not be able to use their Medicaid budgets for services in these types of settings. To ensure residential settings allow individuals access to and participation in community living and pending CMS approval of the Statewide Transition Plan, all new residential settings will be subject to a “Community Integration Review” conducted by DDD. For general information visit WWWSHANJORGABOUTABOUT SUPPORTIVE HOUSING
812
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
INTEGRATED SUPPORTED HOUSING/REVERSE INTEGRATION
In this concept, the housing developer achieves integration by designating some of the rental units for people with disabilities and the majority of the units for those who do not have disabilities, or through reversing a congregate design by slowly integrating non-disabled households into the complex.
Hope House Foundation and Hope House Residential Corporation - Integrated Supported Housing
“Hope House Foundation provides supported living services to adults with intellectual or developmental disabilities exclusively in their own homes or apartments — regardless of how complex their disabilities may be.” Hope House Foundation in Virginia converted all of their group homes and relocated everyone into apartments of their own. In some instances, individuals purchased condominiums or small homes of their own. Most tenants live in larger apartment complexes. Lynne Seagle, the executive director, believes that the 125 people that they support prefer living in their own place. “Having a roommate does not necessarily mean that a person is not lonely, especially if the person does not get to choose their roommate.” The essential ingredient of this organization involves “community connectors” or unpaid folks socializing with individuals who have disabilities. The agency assists the person they are supporting to establish these relationships. This organization found difficulty locating affordable housing in communities where people wanted to live. Not all property owners would accept rental assistance (vouchers). Hope House Foundation established Hope House Residential Corporation to develop housing and manage the properties. This corporation raises funds to purchase apartment complexes. They rent some of the apartments to tenants with disabilities but most of the people living there do not have special needs. This ensures that everyone with supported services lives integrated lives within typical communities. The rental incomes received exceed the property owner’s expenses. These profits subsidize the living expenses of residents who need such assistance. Because the property owner and service provider are separate entities, the tenants can select a different service provider without having to move from their apartment. Conversely, they have the option to move to a different location and keep their supportive service provider. For more information visit WWWHOPE HOUSEORG .
After settling into his new home, Phil reports “For the first time in my life, I have friends.”
9
HOUSING OPTIONS WITH INNOVATIVE ELEMENTS
Individual-Directed Supports Model: Mary’s Home
Mary lives in an affordable apartment complex in a barrier-free apartment. In this particular
public housing complex, the residents must be 55 years of age or older. Mary financially qualifies for residency with income from Social Security. With a State Rental Assistance Program (SRAP) voucher, Mary contributes 30% of her income and the voucher subsidizes the balance of her fair market rent. With the remainder of her Social Security check, Mary pays for her food, utilities, clothes and recreation. She also is eligible for food stamps and energy assistance benefits that help to stretch her limited income. A Medicaid waiver funds her supported services that consist mostly of staff supports. With the assistance of a Support Coordinator, Mary selected a provider agency. She interviewed and chose the direct support professionals referred by the agency. These workers provide needed services including physical assistance with transferring from her wheelchair, bathing, dressing, cooking, housekeeping, shopping, budgeting, taking her medications and finding her way about town. Mary’s staff supports her for several hours each day and are on-call in the event of an emergency. Mary has her own one-bedroom apartment with a fully accessible bathroom, kitchen, dining area, and living room. She does not like to cook. She mostly uses the microwave. The local church delivers Meals on Wheels with a hot dinner, a sandwich and snacks each day. On Sunday mornings, Mary’s neighbor drives her to church and then they go out for breakfast. The county offers a transportation service to medical appoint- ments, recreation and shopping. A van from the complex also supplies transportation to the local shopping plaza twice a week. She holds a membership and enjoys swimming at the YMCA swimming pool, when she has free time. Mary attends the community Senior Center for recreation during the day. Within the apartment building, there is a fitness center, computers, and laundry. Some of the neighbors started a social club and asked Mary to join. This social group convenes twice a week to play cards or games in the community room. They also plan outings to the movies, shows and community events. When home alone, Mary wears a personal security system alert button. There is also an emergency call button in her bathroom. In the event of an emergency, Mary can access help quickly through these monitoring systems.
HOUSING SEPARATED FROM SUPPORTS Ideally, a person receives supportive services from a provider agency and holds a lease from another entity. This concept ensures that the person can change where he lives but keep his service provider or conversely, can change his service provider but continue to live in his home. FAIR MARKET RENT (FMR) is the published rental rate established by the U.S. Department of Housing and Urban Development (HUD) and used for determining the monthly rent charged in an affordable housing unit. For more information visit www.huduser.org/portal/ datasets/fmr.html. STATE RENTAL ASSISTANCE PROGRAM (SRAP) or federal SECTION 8 HOUSING CHOICE VOUCHERS are government-subsidized programs that provide rental assistance. Typically, tenants pay 30% of their income towards the cost of the Fair Market Rent and the voucher supplements the difference. An annual certification of income is required to verify that the person’s annual income meets the threshold for rental assistance. People obtain vouchers that are used to pay their rent (tenant-based rental assistance) while other vouchers are attached to the apartment unit (called project-based vouchers). You can apply for rental assistance through local public housing authorities in towns, county or state offices. For more information visit www.portal.hud.gov/hudportal/HUD?src=/program_ offices/public_indian_housing/pha/contacts/nj. With INDIVIDUAL-DIRECTED SUPPORTS, a person exercises more control to manage and direct the supports that they receive. He or she chooses the desired services and who will provide them. A support coordinator assists in planning and securing services. People who self-direct assume more responsibility for independently managing these services. The individual selects one or more providers to serve their needs, based upon a plan and individual budget. Most often, the person has the ability to hire and discharge their direct support professionals. A fiscal intermediary manages the funds and may assume responsibility for paying salaries and administering benefits.
1102
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
In SUPERVISED APARTMENTS,
SMART HOMES AND TECHNOLOGY Depending upon the level of need,
an individual lives alone or with a roommate in an apartment with staff available to them on the premises for up to 24 hours a day.
a person may prefer receiving services on demand in the event of a medical need or emergency. Remote monitoring can identify when staff intervention is needed. The resident can push a button to call for help. In the event of an emergency, sensors identify a problem so that staff can respond to the need. This technology can be programmed so that the person does not have to ask for help.
With funds from the Low-Income Housing Tax Credit Program, a housing developer constructed 64 apartments. Within this building, four apartments adjoin with interior doors between the four living units. The state inspects and licenses each apartment as a community residence. Recently, Gary has been coping with medical issues related to his advancing age and cerebral palsy. His health is fragile and he needs staff present with him throughout the day and night. His individual budget from the waiver was not sufficient to fund all these staffing hours. Sharing the staff supports with his three friends has made this affordable. Gary loves having his own apartment with a kitchen, living room, bedroom and bath. When he feels like it, Gary socializes with his three housemates watching movies or cooking meals together. Direct support professionals are available during the day and one staff overnight. The staff move freely between the four apartments attending to each person as needed. Gary enjoys all of the amenities of living within a garden apartment complex, including having friends and neighbors who do not have disabilities. By sharing the expenses with three other people, Gary can live more independently and afford the services that he requires. Clustered Supervised Apartments within a Housing Complex Model: Gary’s Home
A person may have difficulties performing certain tasks. Many low to high technological devices are readily available to assist a person to live more independently. These assistive devices can overcome barriers that deter a person from living on their own. Simple apps on a smart phone possess unlimited possibilities for controlling the environment. Pre- programmed devices can automatically provide schedule information and prompts. Simple machines alert and dispense medications at designated intervals. If a dose is missed, these systems contact a designated person by telephone to follow up. Monitors signal an alert when someone falls, has a seizure, is in the bathroom too long or the front door opens. Emergency call buttons, computers or video cameras provide communication in the event of an urgent situation. Programs operate environmental controls such as lights or thermostats from computers or cell phones. Sensors detect when a stove is unattended and automatically shut it off. There are endless technological solutions that can be incorporated into a home to overcome barriers, reduce reliance upon personal aides, increase independence and keep people safe. Many simple assistive devices are purchased inexpensively. Systems that are more complex may be costly. If medically necessary, some items are paid by medical insurance. Technology that promotes independence may be funded through the NJ Comprehensive Medicaid Waiver. Lending libraries exist so the person can test the equipment before purchasing. The Faison Residence in Richmond, Virginia, is an inclusive community of 45 apartments with 30% of the units designated for those with special needs. Affiliated with The Faison Center for Excellence, the residence incorporated smart home technology into the construction to benefit all of the occupants. For more information visit www. FAISONRESIDENCENET . At the renter’s request, remote monitoring by staff is available. Homelink Technologies consulted on the state of the art design. Go to WWWDISABILITIESTEMPLEEDUTECH or WWWHOMELINKTECHNOLOGIESCOM for sources for technological or adaptive devices that assist independence. The Assistive Technology Center in New Jersey has a lending library that can be accessed at WWWASSISTIVETECHNOLOGYCENTERORG
11
HOUSING OPTIONS WITH INNOVATIVE ELEMENTS
3HARED ,IVING
SHARED LIVING means that a few unrelated people, with or without disabilities, share their resources to live in one home. This model works best when the person with special needs holds the lease and chooses who the housemates will be. Housemates might receive remuneration in exchange for providing supportive services. Often, long-term relationships develop among the people who share their home and their lives. Agencies such as HomeSharing Inc. provide services to screen and match people interested in sharing responsibilities and expenses of a home. For more information visit WWW(OME3HARINGORG . These matching services are available in some but not all counties in New Jersey. In this model, social workers reach out to home providers (home owners with extra room and a willingness to share common space in return for payment toward household expenses), and home seekers (persons of very low income who are in need of a place to live and cannot afford independent housing), to provide match making opportunities. CIRCLES OF SUPPORT is a group of people chosen by an individual to help achieve valued outcomes. This group meets regularly and assists the person in making decisions and taking charge of his/her own life.
Shared Living Model: Dan’s Home Dan enjoys structure and a consistent routine. Adjusting to change makes him uncomfortable. For many years, Dan lived in a group home with six other men with disabilities. Some of the behaviors of the other residents upset Dan. There were many disruptions including a continuous rotation of new staff members. Dan’s parents dreamed of a better life for Dan. They researched an alternative arrangement for Dan called “shared living.” Dan and his family began meeting and planning with a Circle of Support which included his brother, family members and friends. They engaged a provider agency with experience in administering shared living to join the discussions. With the help of the agency, they found a compatible housemate. This person, Todd, receives hourly wages and a portion goes to his share of the rent for the home that he now shares with Dan. With his parents’ assistance, Dan leased an apartment with two bedrooms and two bathrooms for himself and Todd. Todd ASSISTS $AN WEEKDAYS FROM PM AM $AN TYPICALLY SLEEPS THROUGH THE NIGHT BUT Todd is there if he needs help. Dan and Todd share some finances to purchase groceries, utilities and such. Todd helps Dan with his spending and medications. 7EEKDAYS FROM AM PM ANOTHER STAFF PERSON SUPPORTS HIM 3HE ASSISTS WHILE Dan volunteers at the local food pantry, attends the gym and enjoys a busy social life. Two other people spend alternating weekends with Dan and sleep over, so Todd has most weekends free. Before any of the staff began working with Dan, each spent significant time with him at his family home getting to know his daily routine, likes and dislikes. Dan’s parents and sibling are very involved with Dan and his new lifestyle. Initially, they met as a Circle of Support every two weeks until everyone adjusted to the new living arrangements. Now meetings are once a month. Dan and his parents interviewed the potential housemate and staff to ensure that they were the right fit for Dan. The provider agency employs the staff but Dan hires and fires them. Dan enjoys having four people who know him well caring for him. They understand his ways of communicating. They minimize disruptions and respond to changes in his moods. Dan’s preferences are important to them. Dan likes not having to compete with anyone for his staff’s attention. Dan keeps a lively social life that involves his housemates, family, and friends. They enjoy many activities together. Since Todd does not have family living close by, he spends holidays with Dan and his family. These two young men are becoming very close friends. It is hopeful that Todd will be a part of Dan’s life for many years to come.
1122
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
Shared Living with Technological Supports Model: Lenora’s Home Lenora shares her condominium with two women who also are deaf. They assist Lenora to live as
independently as possible despite her multiple disabilities and intensive support needs. Although not everyone with a disability prefers to live with others who do, Lenora enjoys sharing her home with housemates who can communicate with her in sign language. To accommodate hearing impairments, they installed additional equipment such as smoke alarms with flashing lights. Lenora’s bed shakes if smoke triggers the alarm. The phone and television display the words being spoken.
SHARED LIVING ALSO KNOWN AS HOME SHARING As more people find managing the finances of home ownership a challenge, home sharing has gained popularity. Some homeowners have a spare room to rent. An owner may struggle to afford the costs of taxes and property maintenance. Others find it difficult to manage the responsibilities to upkeep a home. They may need assistance with household maintenance tasks. They may be looking for companionship. Those seeking home sharing opportunities may be looking for an affordable place to live and have much to offer as a housemate. Shared living matches these people and their needs. Agencies exist to match seekers with home providers who are interested in sharing their home or apartment as well as the expenses and responsibilities. These agencies conduct screening and background checks of the occupants. For more information visit WWWHOMESHARINGORG . On their own or with the assistance of an agency, the home sharers can sign formal agreements delineating the responsibilities of each party. A model contract for shared living is available at www. ANCORORGRESOURCESBEST PRACTICES . Potentially, this housing option meets many needs through these matches. For example, a person with I/DD may lease an apartment and want to share expenses with someone who can assist with supports. An elderly homeowner might welcome an able-bodied person with I/DD to assist with household duties. There are endless possibilities. With the assistance of an agency, a more formal prescribed process facilitates this match. For more information visit WWWNATIONALSHAREDHOUSINGORG . A Guide for Shared Living specifically for people with disabilities is available at: WWWNASDDDSORGPUBLICATIONSNASDDDS TITLES FOR PURCHASESHARED LIVING GUIDE Check local requirements because some towns may have ordinances that restrict unrelated persons from sharing/subletting their home.
Shared Living with Live-in Supports Model: Eve’s Home
Eve sustained a traumatic brain injury as the result of an automobile accident. She lived for three years in a nursing home where she received therapy as well as total physical and nursing care. Her dream was to return to live in her own home. With determination, she worked through intensive physical, occupational and speech therapy to regain some of the abilities that she lost because of her head injury. A team helped Eve plan for the services needed to live in her own home and funded her transition through the I Choose Home NJ program. For more information visit WWWICHOOSEHOME NJGOV . Through this program and with Medicaid waiver funding, Eve could live more independently in the community. To accommodate her motorized wheelchair, adaptations were made including ramps and bathroom modifications. Because of memory deficits and physical disabilities, Eve could not live alone. Eve hired Olga to live with her. Olga attends to Eve’s care needs and household responsibilities. Eve and Olga share companionship with each other and they have developed a close bond.
13
HOUSING OPTIONS WITH INNOVATIVE ELEMENTS
was made. For the past four years, her housemate, Stacy, has also been her best friend. They chose a service provider who had experience supporting people who wanted to make their own decisions. This agency provides the staff to help these two women live as independently as they can. Tracy and Stacy, along with their parents and the provider agency, discuss any matters that arise that directly affect the ongoing care and happiness of these women. These decisions are always made in the best interest of Tracy and Stacy. Tracy is a person of few words. However, she is very capable of communicating what she likes or dislikes without conversation. Her parents serve as her spokesperson. Tracy’s mom says that this model and the way in which it operates may not be for everyone. Tracy’s parents and sisters are very involved in her life. They oversee the supportive services that she is receiving and advocate on her behalf whenever needed. They help with support. Tracy’s dad has the building expertise to maintain the property. Not everyone can do this but some pieces of this type of self-determined housing may work for others just the same. To ensure continuity, the family has made provisions for a succession plan. When Tracy’s parents can no longer contribute their time and resources, Tracy’s sisters have agreed to take charge. Legal documents have been prepared so that the home will continue to be a home for those with special housing needs, whenever Tracy no longer needs this home.
Home Sharing Model: Tracy’s Home For seven years, Tracy has been living in her own home. She rents her house from her parents. Her mom and dad renovated a lovely
ranch-style home just for her. Tracy’s parents are responsible for maintenance, upkeep of the property, insurance and property taxes. Tracy’s dad is a contractor so he knew how to handle all of the construction and repairs. The barrier-free design of the floor plan anticipated that Tracy was becoming less mobile and relying more upon using a wheelchair. Tracy lives in her hometown in the same neighborhood as her sisters and parents. Prior to living in her own home, Tracy lived in a group home. Due to her increased medical care needs, her parents decided it would be best to purchase a home and have Tracy as the tenant. Her DDD support budget is now used to provide services to her in her own home. Her mom says, “All the stars and the planets were aligned for us.” Mom’s vision and determination were largely responsible for making this dream become a reality. Tracy’s parents called upon key family members, a pro bono consultant, the executive director of the service provider agency, state workers and even the local senator for advice and support. It took two years of planning and negotiating, but their perseverance paid off. Tracy, with her parents’ assistance, selected a housemate to share this home. It took a few tries before the right match
1142
THE JOURNEY TO COMMUNITY HOUSING WITH SUPPORTS
3UPPORT &AMILIES 4EACHING &AMILY (OMES OR (OST (OMES
A SUPPORT FAMILY is a family who is recruited, trained, monitored by a provider agency, and paid to supply long-term care in their home for a person with a disability. Sometimes extended family members provide a support family through kinship care. In other instances, people are recruited who are willing to integrate the person with a disability into their family. Distinguished from traditional foster care, a Support Family can share parental responsibilities with relatives. The person and their family interview and choose their Support Family. Most often, the person’s relatives maintain a strong role in their family member’s life. The concept promotes the development of a strong bond between the individual with a disability and the family they join. Support families tend to be long-term in duration. The Support Family receives training, supervision, respite and assistance from a social services agency that supervises the services. The Mentor Network supplies professional staff in their teaching family homes. In some states like Texas, Support Homes can be funded by a Medicaid waiver to supply wrap- around supports to individuals with intensive medical and behavioral care needs. Pennsylvania calls this model Lifesharing. In New Hampshire, Enhanced Family Care is their most commonly used model. Literature supports that individuals with disabilities, particularly children, respond well in family rather than institutional care. Relatives, birth families and adoptive families can share responsibilities through this family-based alternative. For more information visit WWWEVERYCHILDTEXASORG .
Support Family Model: Dennis’ Home
Before her passing, Dennis’ mom made plans with her best friend, Mary, to look after Dennis. Dennis knew Mary and her husband well for many years. He now lives within their home and shares in all family activities. He participates in all the extended family holidays and events. A special needs trust left by his mom supplies money to support Dennis while preserving his eligibility for SSI benefits, Medicaid and other public entitlements. An agency provides supervision, training and support so that Mary can best care for Dennis.
“Build networks of support for yourself and your family member. You can learn so much from others. Many are willing to help if you invite them in.”
In New Jersey, a licensed s #/--5.)49 #!2% 2%3)$%.#% s 4%!#().' &!-),9 (/-% s (/34 (/-% /2 s &/34%2 &!-),9 (/-%
is where an individual lives as part of the family of a caregiver who provides training and assistance for that person.
Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12 Page 13 Page 14 Page 15 Page 16 Page 17 Page 18 Page 19 Page 20 Page 21 Page 22 Page 23 Page 24 Page 25 Page 26 Page 27 Page 28 Page 29 Page 30 Page 31 Page 32 Page 33 Page 34 Page 35 Page 36 Page 37 Page 38 Page 39 Page 40 Page 41 Page 42 Page 43 Page 44 Page 45 Page 46 Page 47 Page 48 Page 49 Page 50 Page 51 Page 52 Page 53 Page 54 Page 55 Page 56 Page 57 Page 58 Page 59 Page 60 Page 61 Page 62 Page 63 Page 64 Page 65 Page 66 Page 67 Page 68Made with FlippingBook - Online magazine maker