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INTRODUCTION

The intent of these success stories is to provide ideas and inspiration to the families of persons with developmental disabilities who wish to create quality living arrangements for their children. We hope these stories will provide encouragement and useful examples that will assist families, people with disabilities, and their advocates to create individualized living arrangements in their communities.

This section tells eight success stories of people who have created innovative living situations in their communities. Each story is accompanied by information about the resources and innovative strategies that were involved in creating the living arrangement.

We also briefly describe practices that enhance the opportunity for consumers to exercise choices in where and with whom they live and what types of supports they most want and need.

We wish to express our appreciation to Rick Blumberg, who co-authored this section, and to the individuals and families who told us their stories. Their creativity and hard work are an inspiration to us all.

JIM'S STORY

Jim is a twenty-four year old man with a steady job he likes, and an active and varied social life. He shares an apartment with a house mate. He and his girlfriend recently became engaged. Things are going pretty well for Jim, however, it wasn't easy to get where he is today.

Jim's childhood was difficult. He didn't speak until he was six, and required intensive speech therapy. He often engaged in temper tantrums. But Jim was always included in family and community life. He went to the same neighborhood school as his two brothers. According to his mother, it was this exposure to typical social activities that helped Jim develop his good social skills.

When Jim was nineteen, his family moved from the country to the city . For about a year he was afraid to go out on his own . Then one day as he bicycled around his new community, he was hit by a car. This incident set him back, but it didn't stop him.

At about this time, conflicts began to develop at home. Jim didn't sleep nights, and once he did sleep, didn't wake until afternoon. His schedule disturbed the household. He was stubborn and moody. He wanted to move out on his own, but his family didn't think he could make it.

APARTMENT LIVING PROGRAM

Jim's mother, who is a Director of The Arc, began to explore possible living arrangements for him. She worked with the local school district to develop an apartment living program for high school students with disabilities who were getting ready to move out into the community. She found an apartment building to house the program, and developed the training and support services. Funding for the program uses a portion of a student's Social Security Income (SSI), and parent contributions. Staffing is provided by The Arc and the school district.

A year after he graduated from High School, Jim entered the Apartment Living Program. There he began the process of learning to live with increasing independence. He met his current girlfriend, and they began dating.

PASS PLAN

Jim's mom learned about Social Security Work Incentives, and wrote one of the first Pass Plans in the state. The Pass Plan allowed Jim to save part of his Social Security Income (SSI) for job training. Jim and his mother used these funds together with support from the Vocational Rehabilitation Division (VRD), to obtain job development and job coaching from a vocational provider. The agency helped Jim to get a job in the Food Service Department at a university. (To find out more about PASS Plans turn to Section 3-11)

LIVING IN THE COMMUNITY

Jim moved from the Apartment Living Program into a two bedroom apartment. His mother assisted him to find the apartment, and negotiate the lease. They found Jim a roommate. His mother supported Jim by assisting him with his money management, shopping, and keeping the apartment clean. Unfortunately, after a few difficult months, it was clear that Jim and his roommate didn't get along.

Jim wanted to try living alone, and so he and his mother found a one bedroom apartment. Jim found a job on his own doing janitorial work at a local tavern, and left the Food Service job. He likes the place, and works afternoon hours, which fit his sleep schedule.

A friend of Jim's has moved in with him, and they seem to be getting along well. Jim appears to be enjoying his independence. He socializes at a local bike store, enjoys watching videos, visiting friends, and eating out with his girlfriend. He bicycles everywhere, participates in Special Olympics, and participates in the "Terrific Twenties” social group.

His mother reports that Jim has really improved his money management skills. She continues to support him by doing the monthly grocery shopping with him, and reminding him to clean his apartment when it gets too messy. Jim recently established credit by financing the purchase of an engagement ring.

JIM'S MONTHLY FINANCES

WHAT IS INNOVATIVE ABOUT JIM'S STORY?

• Collaboration between The Arc, parents and the school district to develop an Apartment Living Program

• Use of a PASS Plan to shelter SSI income for job development and job coaching.

• Use of Vocational Rehabilitation Division services and private pay contract with a vocational services provider.

• Jim's mother assisted him to find an apartment, negotiate the lease, set up his home, and find a house mate. She provides ongoing support to Jim in his money management, shopping, and household management.

• Jim uses a variety of community programs and resources for his social and recreational activities.

LAURA'S STORY

Laura is a twenty five year old woman who shares a two bedroom unit in a duplex with a friend. She has a job that she likes. She is pretty independent, but requires some regular ongoing support. Her neighbors in the duplex are very helpful. They assist her with her medical needs, money management, shopping, and other day to day needs. Her neighbors are her mom and dad.

When Laura was a teenager, her parents would not have dreamed that she would come to have such an independent lifestyle. But within the last few years, she began to demonstrate the ability and desire to live in her own home. So, a few years ago, when Laura's parents were in the process of moving to Oregon from the east coast, they looked for a property that included a private living space for Laura. They purchased a duplex that met their needs.

HOUSEMATES THAT SUPPORT EACH OTHER

Laura and her parents found her a housemate, a young man named Andy. Laura and Andy have a non-romantic relationship that seems to work well for them both. Laura has pretty good money management skills, Andy does not. Andy likes to clean house, Laura doesn't. They complement and support each other. They are good company. Laura and Andy both have counselors that visit them at home, to provide them with emotional support, and help them get along.

PARENTS PROVIDE SUPPORT

Laura has a seizure disorder and other health problems that require medication and monitoring. Her parents help her with her health maintenance. Laura has Medi-Care and Medi-Gap insurance. Her parents found a dentist who treats her at a reduced rate. Laura's father feels she will always need some assistance with her health care.

Laura's father helps her to pay her bills, and balance her checkbook. Her mother helps Laura and Andy do the weekly shopping. Laura and Andy have dinner with Laura's parents on Tuesday nights. Laura's parents have set some pretty clear boundaries to protect their privacy. Laura and Andy respect these.

PARTICIPATION IN COMMUNITY LIFE

Laura gets around town by bus, bike and walking. With the support of a job coach, she works each day at a local restaurant. She has a health club membership and goes to the club three times a week. She likes the club. She has made acquaintances there, and enjoys socializing. She participates in Special Olympics, and recreational activities sponsored by the Arc. She occasionally has friends over for pizza and videos.

LOOKING TOWARD THE FUTURE

Laura's living situation is working pretty well for her and her parents. Her parents would like her to have increased independence. Perhaps one day soon she will move into another home, nearby, but with a little more privacy for all.

Laura's parents are working to create a secure future for her, and other people with developmental disabilities. They are quite active in The Arc. Together with other families they have established a Supplemental Needs Trust through The Arc. This trust will provide ongoing supplemental funding for support services for people with developmental disabilities who live on their own.

LAURA'S MONTHLY FINANCES

Laura's parent's assist with her living expenses. They pay for her job coach, and her counselor. Aside from these costs, this is what Laura's monthly income and expenses look like:

WHAT'S INNOVATIVE ABOUT LAURA'S STORY?

• Laura's parents purchased a duplex so that they and Laura could have private living spaces. This arrangement enables them to provide Laura with some of the support she needs to live with increasing independence. They maintain their privacy, and Laura has hers.

• Laura's parents have arranged for Laura to have a personal counselor who visits with her 3 to 4 hours each week in Laura's home. The counselor provides Laura with emotional support and helps her with decision making. Laura's parents pay for this support. They feel it has been a key factor in Laura's successful, increasing independence.

• Laura has a job coach. Laura's parents pay for this service. Laura has had difficulty maintaining employment, and appears to need regular, ongoing support.

• Laura's parents are active in The Arc. Together with other families, they are working to create a supportive community for Laura. They have established a Supplemental Needs Trust with other parents through the Arc. This trust will provide supplemental funding for support services for persons like Laura, who require some regular, ongoing support to live on their own.

ALICE'S STORY

Alice is a 28 year old woman who volunteers at the local women's shelter, enjoys swimming, taking classes, and visiting with friends and family. She chooses to live alone. Alice rents an apartment that is close to downtown and near a park. It is light and airy and has been made accessible to meet her needs. Alice has had to learn to speak clearly and insistently about her rights and preferences in order to create the lifestyle she now enjoys.

Alice was born with spinal bifida. She lived with her parents until she was ten years old. Then she lived in a foster care home, and spent her adolescence at a home for handicapped children. At age 18 she moved to a nursing home where she stayed for 13 months. Alice hated having to tell the nursing home staff when she was coming and going, and who was visiting her. She wanted to control her own life.

EMPLOYMENT, SERVICES, AND HOUSING WITH OSLP

When Alice was 19 she was asked to work for a supported living program as a "live-in-role-model.” In return she received free rent and services. This arrangement lasted until Alice found her room mate too difficult to live with.

The supported living program invited Alice to be an Assistant Manager at an apartment complex managed by the agency. She managed 6 residences at various times. Simultaneously Alice attended Lane Community College and earned an Early Childhood Certificate with a Handicapped Endorsement.

At this time, the Senior and Disabled Services Division began offering Alice service payments. In 1990 she quit her job, having decided she did not want to work with adults with developmental disabilities.

SELF ADVOCACY

Alice's mom helped her get onto the waiting list for general housing assistance through the Lane County Housing Authority. After a three year wait Alice was able to move into subsidized housing owned by the Housing Authority. The unit that Alice rented was made minimally accessible. But because of the way the kitchen was designed Alice could not cook for herself. She also found the bathroom to be unsafe. These barriers prevented Alice from being as self sufficient as she is able to be.

Alice learned about the Americans with Disabilities Act, and her right to accessible housing. She requested the Housing Authority to provide a fully accessible unit for her. After many phone calls, the Housing Authority assigned a contractor to work with Alice. The contractor interviewed Alice, but months went by without any action. Alice contacted the Housing Authority and learned that her contact person had left the agency, and the contractor had gone out of business. It took many more phone calls and the support of her case manager to finally get the remodeling done. Now Alice can cook for herself and safely use the bathroom. Alice has a work table in the living room with a telephone. Sitting there, she faces a large picture window which overlooks the park.

ALICE'S CREATIVE PATTERN OF SUPPORT SERVICES

Alice receives $811 a month in SSI benefits. She receives additional benefits which belonged to her deceased father. The Social Security Administration requires her to pay $309 of this towards purchasing support services she receives from the supported living program. This provides her with 4 days a week of medical assistance, 3 days a week of assistance with gym workouts and swimming, support groups, crisis intervention, and assistance in hiring and training her personal assistants.

Senior and Disabled Services provide her with 4 hours a day of support for daily house keeping and some medical assistance.

Alice goes to Easter Seal pool and camp.

"Through Parks and Recreation I have made my own little support system."

"Lots of people don't know they can make the system work by getting different agencies to do different things."

Alice also successfully advocated for herself to obtain appropriate transportation. The bus line which runs near Alice's house stops running at 5PM. Alice requested to be able to access Dial-A-Ride. Over a period of two years, she applied and was denied four times because it was felt she could take the public bus. But Alice has poor vision after dark, and she was able to get a doctor's note which enabled her to get a "conditional Pass” for bad weather or travel after 5 PM.

"I'm having a hay-day since I have Dial-a-Ride."

ALICE'S MONTHLY FINANCES

WHAT'S INNOVATIVE ABOUT ALICE'S STORY?

Alice created the housing and support situation that she wants. "I like where I live, it's independent!"

In creating this situation Alice used a variety of support and financial resources for herself including:

• Section 8 subsidized housing

• Easter Seals

• Dial-A-Ride

• City Parks and Recreation

• Oregon Supported Living

• Senior and Disabled Services

ANNA'S STORY

Anna is a 24 year old woman who lives in a duplex unit with her boyfriend. She works at Burger King and enjoys a wide variety of sports activities. In her free time she skis, plays soft ball, basketball and bowls. Anna is outgoing and resourceful about getting her wants and needs met.

Anna and her mother (Francis) moved to Oregon from California in 1990. At that time Francis bought a house for the purpose of creating a group home in which Anna would live. The Developmental Disabilities Services Division (DDSD) put Francis in contact with two women who wanted to be care providers but didn't have a house. DDSD provided the service dollars for Anna, Francis provided the house and liked the service providers.

While Anna was living in this group home Francis paid $400 a month to a supported employment agency to support Anna in an employment situation. Francis looked at these payments as the equivalent of college tuition.

One year later the service providers didn't want to manage the group home any longer. Francis recruited new care providers, but Anna did not get along with them. Francis decided not to recruit new care providers but to move Anna instead. Francis learned that it's best to separate housing from support services. If Anna's housing had been independent of the support services she could have changed the services without moving.

Anna moved into another group home. She found that the rules in her new "home” were too rigid. If she returned home from work after 6 PM the kitchen was "off limits” having been "closed” for the night. Anna said "I'm 24 years old, why can't I eat something after 6 PM?”

Anna stayed in this group home for about one year. Her mother still owned the house in which the prior group home was housed. During this year Francis received a newspaper article from her sister about people with disabilities needing a sense of "home” just like anyone else. After reading this article Francis began to wonder "what's next?” for her daughter.

After one year Francis finally found buyers/investors for the first house who agreed to let it remain rented as a group home. She then had money which could be invested in another house. Francis began looking for duplexes with the idea that Anna could live on one side with service providers living on the other. Eventually, she found a large single family home which could easily be remodeled into a duplex with two separate units. This house was too expensive so Francis asked a friend to invest with her. When remodeling, Francis acted as her own general contractor. This meant that she had to hire and supervise each "sub-contractor” that worked on pieces of the remodeling. She had walls added, changed windows and made a bedroom into a second kitchen to create two entire units.

Now Anna lives on one side of the duplex and her care providers live on the other. Anna's life changed with this new arrangement. People like her at work and she has less problems managing her behavior. Anna says "It's because now I'm living independently.” Now it's Anna's house. If the supports don't work they can be changed without Anna having to move.

The current support providers receive free rent. Francis feels they are not overly controlling and that they think through who should make what decision about Anna's life. Anna is a good cook and does her own cleaning and laundry. She needs lots of support with her budgeting and needs advice about shopping and menu planning. Her "care providers” are available to share resources and support when Anna needs them.

ANNA'S MONTHLY FINANCES:

WHAT'S INNOVATIVE ABOUT ANNA'S STORY?

• Anna's support services are separate from her home. This allows her to change her supports without moving.

• Anna's mom was willing to try a variety of living arrangements before finding one that worked.

THE JACKSON COUNTY FAMILY CONSORTIUM

The Jackson County Family Consortium is a "family developed, family centered and family driven support system” that supports a shared household in which three adults with developmental disabilities live. The Consortium serves as the administrative body of a non-profit public benefit corporation that involves persons with developmental disabilities, their families, and friends in the management of the home.

HOW THE CONSORTIUM GOT STARTED

The Consortium began as the result of three families who got together over the years to socialize. The parents watched their developmentally disabled children growing up, and began to develop a vision of their ideal supportive living situation. They spent a couple of years formalizing the values that would guide their plans.

The parents were concerned with issues of health, safety, and quality life styles for their children. But they knew they didn't want anything like the group homes they had seen, with lots of training and structured programming. They desired a place where their children could come home after work, have a beer, and read a magazine.

How could they ensure adequate support for their children, while maintaining a comfortable environment that felt like home? The families began to research state regulations and procedures for foster care homes. They drew upon an Ohio Consortium model for their management structure. They presented a proposal to the County Developmental Disabilities Services, and received approval for licensure as a foster care home. They applied for and were granted non-profit, tax exempt status.

CREATING A HOME

The Consortium rented a "funky” old two story, four bedroom house, and hired a live-in, licensed foster care provider. The County sent each of the three residents of the home a monthly check to pay for the foster care services. From these funds, the Consortium paid the care provider, and paid for other costs of maintaining the home. The foster care provider was also provided room and board as a benefit of employment.

In addition to the support provided by the foster care provider, the families shared responsibility for the management and maintenance of the home. The local school district provided independent living skills training in the home as part of the residents' transition plans. The residents shared household maintenance tasks.

A GOOD THING GETS BETTER

In 1994, the Consortium found a comfortable ranch style home which it rented. The new home is a single level, and so it is easier for people to get around in. It has a separate living space for the care provider.

The local Program Manager of the County DD Services recently agreed to use a Family Support model to fund the support services the Consortium provides. This is a simpler way of paying the Consortium for the support services they provide.

HOW IT ALL WORKS

• The County provides $1,500. per month to the Consortium through Family Support funds.

• The Consortium pays a live in care provider $1,000. per month, plus room and board.

• Each person living in the home pays $360. per month for rent, utilities, & miscellaneous household expenses.

• Residents pool their money to buy groceries and household supplies.

• Consortium members volunteer their services to support the management and upkeep of the home. There are three families currently involved in the Consortium, and each family assumes an important responsibility. One parent is responsible for personnel management ( the live in care provider is an employee of the Consortium); a parent is responsible for maintaining the physical plant ; and a parent is responsible for the financial management of the Consortium.

BENEFITS OF THE CONSORTIUM MODEL

The intent of the Consortium is to provide family developed, family centered, and family driven support to persons with developmental disabilities living in their own home. This approach shares decision making and management activities among residents of the home, family members, and the care provider. For the parents who developed the Jackson County Family Consortium, it is a way for them to continue to play an active role in caring for the emotional, physical, and educational needs of their adult children.
One Consortium member reports that "The experience has been fantastic.” However, she cautions that parents "need to know that when problems come up, there aren't a lot of resources to fall back on.” She states that, "You need to return to the idea that this is your kid's home, and you are going to make it work no matter what.”

WHAT IS INNOVATIVE ABOUT THE JACKSON COUNTY FAMILY CONSORTIUM?

• Residents and family members share decision making and manage the household.

• Use of non-profit tax exempt status.

• Use of foster care and family support models to fund support services.

• Residents pool resources to rent a shared house, pay utilities, and purchase groceries.

• Consortium members volunteer their services for personnel management, maintenance of the home, and financial management of the consortium.

JAN'S STORY

Jan is a 30 year old single mom. Her boys are eight and two years of age. Jan is a person who carefully considers advice and is intuitive. She is a good self advocate. She cares about others and has strong family ties.

Until recently Jan lived in subsidized housing. The building she lived in was a dangerous place. There was a murder in the apartment next door and a second murder in her complex. The violence was so frequent that the Portland Police Department situated an office in the apartment building. Jan and her children lived in fear. Jan wanted to move, but since she was already in a subsidized apartment building, she was told she couldn't apply for or transfer to another one.

Because Jan has a developmental disability she has a case manager who works for the Multnomah County Developmental Disabilities Services. Her case worker assisted her to develop a plan for relocating. He or she was able to help her to move into a two bedroom house where she would be safe. Short term diversion money was used to subsidize her rent for three months, because her previous apartment was potentially a life threatening situation.

Jan applied for short term rental assistance through a program funded by the Housing Authority of Portland called RASP. Through RASP, a consumer pays 50% of her income towards rent. RASP pays the balance & move-in fees, up to a maximum allowance. Jan could get this assistance for up to 12 months.

Jan's housing specialist and case worker helped her apply to purchase a house through Habitat for Humanity. Although Jan's income was lower than the amount usually required, they convinced Habitat that Jan had a good rental payment credit history plus support from her family and church. Habitat accepted her as one of their home purchasers!

BUILDING SWEAT EQUITY

Jan had to earn 425 hours of work "sweat equity.” Habitat was very flexible about how Jan earned her work hours. Jan did clerical work and cleaned the Habitat office for 3 hours each day. The Habitat staff saw Jan daily and have gotten to know her. This has also helped Jan get used to working regularly.
When Jan worked in the office her mother watched her two children. Habitat counted her mother's child care hours as sweat equity for Jan as well. Whenever Jan or her case worker attended "ground breaking” ceremonies for other new houses, Habitat counted those hours towards Jan's sweat equity as well.

Even with the sweat equity, Jan was required to pay $600 towards her down payment. Jan put aside $70 a month and Multnomah County DD services set aside $30 a month from their Discretionary Assistance Fund. In six months Jan had enough saved for her down payment.

A HOME OF HER OWN
Now Jan is purchasing her own home in a safer neighborhood in Northeast Portland. When Jan was renting, she paid $400 a month. In her Habitat home she pays $350. This includes her mortgage, taxes and insurance. Usually Habitat requires children of the same gender to share a bedroom. However, since Jan's children are 7 years apart in age they let Jan purchase a three bedroom house.

JAN'S FINANCES

WHAT'S INNOVATIVE ABOUT JAN'S STORY?

• The Case Worker and Housing Specialist acted as her advocates - spending a lot of time planning for her relocation and hooking her up with Habitat for Humanity.

• Jan was assisted in a variety of creative ways to acquire her "sweat equity” hours.

• Habitat for Humanity accommodated Jan's needs and capitalized on her strengths.

THE FRIENDSHIP HOMES FAMILY CONSORTIUM

In the Fall of 1993, the Multnomah County Educational Service District sponsored a series of meetings regarding the transition from school to adult life. The participants formed groups according to the issues that concerned them most. One group of parents was especially interested in housing issues. They were joined by the Housing Specialist of Multnomah County Developmental Disabilities Services. This group of families became the core of what is now the Friendship Homes Family Consortium.

DEVELOPING A SHARED VISION

The group began by sharing the Personal Futures Plans of each of their sons and daughters. As they shared their personal futures plans, the parents also shared their fears, hopes, resources and time commitments.

The parents began to educate themselves about housing. They toured supported and independent living options in Multnomah and Clackamas Counties. They wanted to find a model that could be responsive to a range of support needs. They critiqued the various models of supported living they had learned about. This process took a few months. A parent from the Jackson Family Consortium came to speak with them.

The group did not feel that small was necessarily better. They did not want their children to be isolated, or to be financially insecure. They chose the adult foster care model and calculated the costs involved.

The young adults came to the meetings as well. They mingled with each other in an adjoining room. Two paid facilitators helped them get to know each other. The facilitators then shared their observations with the parents about how well their sons and daughters got along.

The group decided to form a non-profit corporation. They elected a board of directors and they filed the paper work for their non-profit status. The board consists of 4 parents and 2 community members.

A deadline was approaching for applying for Community Development Block Grant funds (CDBG). Since they did not yet have their non-profit status they got permission from another non-profit corporation to use it's non-profit status. The Housing Specialist from Multnomah County Developmental Disabilities Services wrote the CDBG/HOME grant for them. The grant requested $108,000 from the city of Gresham and $27,000 from Multnomah County. $37,000 was collected through private fundraising. With this money they bought a house and are renovating it. They will have no house payments.

The consortium's first project will use an adult foster care model. Five young people will live in this home. The plan is for this home to be licensed by Multnomah County DD Services under their adult care home licensing requirements.

HOW THE SUPPORT SERVICES WILL WORK

• Residents will "pool” their SSI to pay the salary and benefits of a support service provider.

• Each resident will pay $328 a month (x 5) towards the provider's salary and fringe. This payment will be called a "room care and board payment.”

• The residents will be the employers.

• The service provider will have a 40 hour work week. The provider will be considered a "live in domestic companion.” This employment category will allow for overtime.

• The room and board payments will be made by each resident to the consortium.

• The board will raise another $12,000 a year to pay for other operating costs.

WHAT'S INNOVATIVE ABOUT THE FRIENDSHIP HOMES CONSORTIUM?

• Parents will be the weekend respite providers.

• Parents will go through adult foster care giver screening and training.

• Parents will be involved in support. Parents feel this will insure quality and affordability.

• The consumers got to know each other ahead of time to insure compatibility.

TOM'S STORY

Tom is 26 years old. He has a good sense of humor and is very sociable. He has lived with his parents all his life. At 26, his family feels that he should be with friends close to his age who share his interests. They don't want to wait until a crisis to begin setting up a supportive living situation. His mother says, "I don't want to wait until I'm so old that he'll go into the system because of an emergency. That way there's no choice or parental control.” Tom's parents want input into what's going to happen to their son.

Tom has no siblings. His parents have always been his primary source of support. During the day Tom works at his job from 8AM - 2:30 P.M. In the afternoons he listens to music, watches TV, naps or plays with his dog. In the evening he enjoys running errands and going to the mall with his mom. On the weekends he participates in Special Olympics.

Two years ago, Tom and his family began meeting with the other families of the Friendship Homes Family Consortium. Recently, the Consortium purchased a home using Community Development Block Grants. (See proceeding story for details). The families are now renovating and remodeling the house they purchased. Renovations are being paid for by contributions from parents and community members as well as donations of labor and materials.

Tom's primary source of income is his SSI payments which are $450 a month. He works at CCI where he earns $100 a month. His parents will pay a move in fee. Part of his SSI income will go to pay his room and board. All the residents will pay room & board which will cover the cost of a live in support provider.

TOM'S FINANCES