A GUIDE TO LIVING ARRANGEMENTS FOR ADULTS WITH DEVELOPMENTAL DISABILITIES
Regional Center of Orange County 1525 North Tustin Avenue Santa Ana, CA 92705 (714) 796-5100 www.rcocdd.com
WHERE I CAN LIVE… AT HOME At Regional Center of Orange County, we believe you should have as many choices as possible. That means that there are as many living options as there are people!
This guide is for adults with developmental disabilities and their families. We hope you will find it helpful as you develop your own vision about how, where and with whom you’d like to live, and choose the living option that is best for you.
The purpose of this guide is to answer some of the questions you and your family probably have about different living
It is only the beginning, though. You will also need to talk to and work with many people such as family members, friends, employers, and your service coordinator to make your vision for your future come true.
Noun: The place where one lives permanently, esp. as a member of a family or household. Adjective: Of or relating to the place where one lives
If you are an adult with developmental disabilities, you have more living options from which you can choose than ever before.
You can choose to live:
• With your family • In an apartment you rent • With a spouse or loved one • In a house you rent or own • With a friend • In a licensed home • With a group • With a roommate • Alone
And we are coming up with more options every day!
What is a “living arrangement”? It is where, how, and with whom you live.
As an adult, you probably make a lot of your own decisions. One of those decisions is the choice you can make about your living arrangement. When it comes to making that choice, you have many options from which to choose. You could choose to live:
1. With your family. 2. On your own, away from your family, with services and supports that help you — we call this option “Independent Living” or “Supported Living.” 3. In a licensed community care home with other adults with developmental disabilities. 4. In a foster family setting. 5. In a licensed intermediate care facility (Family Home Agency) that provides special health care or habilitation services, if you need those things.
Let’s take a closer look… 4
If you’re an adult with special needs living with your own family, RCOC can help you find services and supports to help you live a meaningful, productive life.
Like most adults we serve, you may have a job, go to school, participate in some type of day program or activity, or volunteer.
If you have special health needs, the regional center may be able to arrange for nursing care to help you remain at home.
If you’d like to acquire skills that will make you more independent while you are still living with your family, RCOC may be able to arrange for independent living skills instruction (ILS) where you can learn how to do such things as budget your money, shop for yourself or use the bus system to get around on your own.
But what about the times when you aren’t at work or a day program or school or volunteering? There are all kinds of social and recreational opportunities and groups you might want to join. Your service coordinator can tell you about them. RCOC also sends you newsletters and mailings and emails about social and educational opportunities. You can also check-out RCOC’s Events Calendar and consider getting involved with RCOC’s Consumer Advisory Team. 5
ON YOUR OWN INDEPENDENT LIVING OR SUPPORTED LIVING
If you choose independent living or supported living as your living arrangement, you will live in your own home — whether that’s an apartment or house that you own, lease, or rent. You will live by yourself, or with someone else of your choosing. And you will choose whether to live independently without supports, or to receive Independent Living (ILS) services or Supported Living (SLS) supports to help with certain needs like budgeting, paying bills, shopping, learning to cook or problem solving. Maybe you have been afraid to think about living independently because you thought you had to do it all by yourself. A lot of people need some support in order to live on their own. Because different people have different needs, it is important to really think about the types of support you will need. Many support options are available. Discussing your goals with your service coordinator and Circle of Support will assist you in beginning to plan to live independently. Some of the supports you need to live on your own may be the kinds of things that good friends or family members offer each other—we call those “natural supports.” For example, this might include things like transportation to and from the market or help with getting furniture for your new place. Other supports may be available from other organizations, such as personal care assistance offered through In-Home Supportive Services (IHSS). We call this kind of support “generic” support or generic resources. RCOC may arrange for other services and supports including training, or help in learning or performing daily living skills such as budgeting, menu planning and home-making. These supports are tailored around the individual’s needs and take some time to plan. Y our service coordinator can help you in looking at all of your
options and services you might need. The most important thing to remember if you choose Independent Living or Supported Living is that you are not alone! 6
A LICENSED COMMUNITY CARE HOME
Sometimes called a “group home,” a community care home is licensed by the State of California to provide services and supports for adults with developmental disabilities.
If you choose to live in a community care home, you will probably be living with three to five other adults with special needs and you may share a bedroom with another person. Staff members also stay in the home to provide care and support.
In addition to having meals provided, you’ll receive training and support in self-care, daily living activities, and other skills based on your talents and your needs. You will also socialize and go on outings in the community with the other residents.
There are many different homes from which to choose. Each home offers something different: some specialize in helping their residents with physical disabilities, behavior challenges, or other special needs; others teach independent living skills. You’ll probably have several licensed community care homes from which to choose because RCOC works with hundreds of community licensed homes. 7
FAMILY HOME AGENCY A HOME LICENSED BY A FAMILY HOME AGENCY
Maybe you’d like to live in a family setting. Some of these homes are similar to community care homes, but are certified to care for only one or two adults and they are under the supervision of licensed family home agencies.
If you choose this option, you’ll be included as a “member of the family” and you’ll participate in family activities. If you have special needs, such as behavioral challenges or you need more training in daily living skills, RCOC will work with the family home agency to see that you receive the special services and supports you require.
LICENSED INTERMEDIATE CARE FACILITY SPECIAL HEALTH CARE OR HABILITATION SERVICES
Health and Habilitation homes are licensed by the California Department of Health Services. This option may be the one for you if you need nursing care, ongoing supervision by a doctor, and habilitation and therapy services available where you live. Staff in these homes may have training in nursing, physical therapy, occupational therapy, speech therapy, or similar fields. Usually, six or fewer people live in an intermediate care home and staff members are on duty 24 hours a day. In addition to health and habilitation services, you also receive training in self-care and independent living skills, and have opportunities to socialize, go on outings in the community, and take part in outside activities.
How do I choose which living arrangement is best for me?
Deciding how, where and with whom you live is an important step, and you have quite a few options from which to choose.
How do you know which one is best for you? We encourage you to think about it and to talk to other people who know you well before you make up your mind.
Ask your service coordinator to arrange for you to visit a variety of homes.
If you think that your own home or apartment may be an option, ask to visit someone in ILS/SLS settings.
Be sure to ask questions.
Your family may visit with you.
What is creating my “vision” about my life? Creating your vision means thinking about your strengths and talents, your hopes and dreams, and then using what you’ve discovered about yourself to put together a plan for your future, including your living arrangement.
It’s more than just wishing — it’s deciding what you really want, and then doing something to make it happen. It isn’t as difficult as it might sound. It just takes some time, some thinking, and some talking with people who are important to you. You’ll ask yourself and your relatives, friends, teachers, service coordinator and employers some important questions: • What am I good at? What are my talents? • What things do I like? What don’t I like? • What do I need? • What kinds of special needs do I have? • Who can help me with my special needs? • What are my hopes and dreams? • What are my rights? • What are my responsibilities? Answer these questions, and you’ve started creating your vision! Your vision isn’t something that always stays the same, it’s something that can change and grow as you change and grow. 11
What is Person-Centered Planning? Making changes in your living arrangement is a big step. You donâ€™t have to make that important decision all by yourself. If youâ€™re thinking about changing your living arrangement, then it would be a good idea to talk to your RCOC service coordinator. Your service coordinator will suggest that you work together to create a Person-Centered Plan. Person-Centered Planning is a process that helps you look at your hopes and dreams for the future and figure out the support you need from family, friends, community, and service organizations to get there. Your PersonCentered Plan talks about the steps that you need to take to help you achieve your dreams. Remember every plan starts with small steps! You donâ€™t have to do everything at once!
What is a Circle of Support? There are lots of people who would like to help you achieve a good future. The goal of Person-Centered Planning is to build a circle of people who are interested in helping you achieve your dreams. We call those people your “Circle of Support.” A Circle of Support of course includes you — the person in the center of the circle – and might also include your family members, neighbors, friends, employer, teachers, service providers and your regional center service coordinator. It can include anyone you invite to be a member. In the beginning, your circle of support may meet with you several times. The first time, everyone shares what they know about your life, your interests, talents, relationships, health care needs and what you like and what you don’t like. These meetings are very informal and can even take place in your own home.
What does a Person-Centered Plan look like? We know someone whose plan looks like this: • Keep my job at Home Depot – and get a raise. • Move into my own apartment. • Go on vacation to Oklahoma to visit Uncle Doug and my cousins. • Learn to cook. • Find a girlfriend. Someone else we know has a Person-Centered Plan that looks like this: • Move into a home that provides health care. • Get a motorized wheelchair. • Take psychology courses at Orange Coast College. • Visit Las Vegas. And, there is another person whose plan looks like this: • Live with my sister. • Find a volunteer job with kids. • Get a dog. • Save money. • Make new friends.
Once you have worked with your RCOC service coordinator and met with your Circle of Support, you will know what living arrangement would work best for who you are, what you want, what you like, and what you need.
MAYBE… ...you’ll decide to stay at home with your family while you go to college. ...you’d like to try a licensed community care home because you enjoy being around other people and you just don’t want to be out in your own apartment. ...you’d like to rent a room in someone’s house. ...you would feel best in a small home that provides medical, nursing or therapeutic services. ...you want to try living in an apartment with a roommate.
There are all kinds of options... You can choose the one that best meets your needs, but we’d like to offer some final words of advice:
Part of growing and maturing is changing things about ourselves and the world around us. Your vision should challenge you to grow. Still, as you plan your vision, be honest with yourself. And be realistic.
If your singing voice sounds like fingernails on a chalkboard, then it’s probably not a real option for you to become a Country Western singer! But maybe you could collect Country Western tapes and learn line dancing. And maybe even teach your friends!
If your only income is SSI, then it’s probably not an option for you to live in an apartment or house by yourself. But maybe you could live in an apartment or house with a roommate to share expenses.
Planning your vision isn’t a once-and-for-all decision. Your vision will probably change over time, as you learn more about yourself, your hopes, your talents, your needs, and your responsibilities. Just because you choose to work at Von’s Pavilion this year doesn’t mean that you can’t decide that you’d like to go to college to learn how to use computers in the next couple of years. Or just because you choose to live with your parents for now doesn’t mean that you can’t decide to live with some supports in your own apartment sometime in the future. You are getting closer and closer to deciding what living option is best for you. You also need to think about money. To find out how you will you pay for the living option you choose, read the next section…
Who pays for my living arrangement? First let’s talk about a few basics. There are several programs that can help to pay living expenses and provide other benefits for people with developmental disabilities. The law requires regional centers to make sure that you have accessed all of the other programs and benefits available to you before spending any regional center money for your services. Your service coordinator will work with you on this because it can be complicated. Supplemental Security Income As a person with a disability, you probably qualify for Supplemental Security Income (SSI), a payment made by the federal government and the State of California to provide for living costs of people with disabilities, if your income is below the SSI grant. (If you don’t receive SSI, ask your service coordinator to help you apply for it.) If you are already receiving SSI, you need to advise the Social Security Administration whenever there is a change in your living arrangement. SSI will adjust your check based on your living situation. Social Security Administration Some individuals may be receiving Social Security Disability Income under their own claim or Social Security Disabled Adult Child (DAC) benefits under a parent’s claim. This will need to be used toward your cost of care. Personal & Incidental Money People who qualify for SSI and who live outside their family home usually receive Personal and Incidental Money (P&I) every month as part of their SSI payment. You can use your P&I money for clothing, entertainment, or whatever you want. 18
In-Home Supportive Services You may be eligible for In-Home Supportive Services (IHSS). IHSS is money from the State of California, the Federal Government and the County for you to use to hire someone to come to your home to help you if you have a disability and need personal assistance, domestic services, related services (such as cooking, shopping, cleaning), paramedical services, medical transportation, and protective supervision. Parents may also be the provider for an adult with disabilities. You If you have a job and earn money, then part of your earnings may need to help pay your basic living expenses or to cover your costs for Personal and Incidental money just as it does for everyone. If you are receiving Supplemental Security Income or Social Security benefits you need to report wages monthly to Social Security. Parents Parents are responsible for minors. Parents are required to pay a parental fee if a child (under the age of 18) is placed in out-of-home care. This fee is established by the Department of Developmental Disabilities and is based on what it would cost to care for a typical child at home. Shift Nursing Some people who require nursing care may be eligible for shift nursing care under one of several government programs. These include the Early Periodic Screening, Diagnosis, and Treatment (EPSDT) Program services for individuals under age 21, the Nursing Facility Waiver for persons over age 21; and Model Waiver for certain people who are not eligible for Medi-Cal. Shift nursing is funded by Medi-Cal and may cover nursing up to the cost of what it would cost if the individual were to be placed in residential care. This care is available for children and adults residing in their own home, children placed in licensed Small Family Homes or foster homes, and for adults in their own homes in independent living or supported living. 19
Generic Resources The Lanterman Act requires us to always use generic resources before regional center funding is accessed. Generic resources include things like SSI and IHSS, which are explained in this section.
Regional Center RCOC receives money from the State of California to provide you with a wide variety of services and supports you may need, such as: • The service coordinator who works with you and your family; • Workshops and training sessions to teach you about all kinds of things: your rights and responsibilities, building friendships and relationships, how to create a social life, how to become more independent; • Newsletters and training materials like this guide; and • Independent living skills services and supports. Often, all or part of the services and supports you receive can be paid for by the regional center.
Medi-Cal If you are eligible for SSI, you will receive Medi-Cal, which is funded by the federal government and the State of California. It pays for most medical expenses, some types of in-home support and some living arrangements.
In Orange County, CalOPTIMA administers the Medi-Cal program. You will be in a health plan unless you have Medicare. Some services are â€œcarved outâ€? which means that Medi-Cal pays for them directly. For example, most shift nursing programs are paid directly by Medi-Cal. If you live in a Long Term Care facility licensed by Health Care Licensing and you have Medi-Cal, then Medi-Cal will pay for it. Some of these facilities are Skilled Nursing Facility (SNF), Pediatric or Adult Sub Acute Facility, Intermediate Care Facility for the Developmentally Disabled (ICFDD) and Intermediate Care Facility for the Developmentally Disabled Habilitation (ICFDDH).
Other Sources for Funding You may be eligible for many other services or supports, such as bus and rail passes at reduced cost or services from the California Department of Rehabilitation to help you find and keep a job. Your RCOC service coordinator can help you learn about services and benefits that may be available to you.
Now let’s get more specific about how you might pay for the living arrangement you choose… If you choose to live at home with your family If you are an adult, you’ll probably be eligible to receive some SSI benefits to help your family pay for your living expenses. If you are making money from a job, you may use that money to help pay your living expenses and for other things you may choose. You may need special services, such as someone to teach you how to use the bus, a nurse to do a health assessment, assistance hiring a personal attendant, or some kind of in-home health services. The regional center will generally coordinate and pay for those kinds of services if they’re not available from other resources like private insurance or Medi-Cal. If you choose to live on your own in an independent or supported living situation You may receive SSI benefits and/or you may have income from a job. You will be expected to pay for your own rent, utilities, and food with that money. Sometimes, the regional center can assist you with some of these things. You may need special services and supports to make it possible for you to live independently or with a roommate. Maybe some of your family members or friends can provide some of those supports. Depending on your disability, you may qualify for IHSS money which would enable you to hire someone to come to your home to provide personal assistance. You may also qualify for Nursing Facility Waiver (NF Waiver) Services, which can provide nursing services in your own home. RCOC can also provide supports such as someone to help you in budgeting, shopping, cooking and other things a person needs to do to maintain a household. 22
What happens after you’ve decided that you plan to live alone or with a roommate and receive supported living supports and services is the option for you... How do I choose an independent living (ILS) or supported living (SLS) service provider? Your regional center service coordinator will probably give you a list of ILS or SLS providers with whom you can meet before you make your choice. Your service coordinator will select these service providers based on talks that you and your service coordinator had about where you want to live, the kinds of things you want to learn, and what kinds of services and supports you need.
It’s a good idea for you to meet with all of the service providers on the list. Remember, these are important meetings — you may be meeting some of the people who are going to work with you as you become more independent! You don’t have to go to these meetings all by yourself. You can invite a family member or friend to be present, if you want.
Since there are a lot of things to consider, we’ve also created a worksheet that you can print-out and use when you visit different supported living service providers. It includes specific questions to ask and will help you keep track of things you like and things you don’t like about each one. 23
If you choose to live in a licensed community care setting Chances are that your SSI will not cover the entire cost of your living expenses. The regional center receives money from the State of California to supplement the cost of placement above what you receive through SSI, but you will need to pay for the basic level of care from your SSI, Social Security, wages or other income. You may also receive a monthly P&I check (Personal and Incidental money) which you can choose to use for clothing, entertainment, or whatever you want. If you choose to live in a home that provides special health care or habilitation services Your costs in these homes are covered by Medi-Cal, money from the federal government and the State of California. If you are not eligible for Medi-Cal, but you need to live in a home that provides health care or habilitative services, then itâ€™s possible that the regional center may pay for your living expenses. Itâ€™s important to check with your service coordinator because this can be complicated â€“ for example, if you have another source of income besides SSI, you may be covered by Medi-Cal but have to pay a share of your costs.
In general, though, it’s a good idea to ask the service providers questions about themselves, and about the services and supports they can provide to you.
Some of the support you need in order to live on your own may be the kinds of things that good friends or family members offer each other. This would include such things as transportation to and from places of worship or the mall, and cooking lessons, for example. We call these natural supports, and it’s important to be sure that supported living service providers encourage you to develop natural supports.
You’ll also want to ask them if you can meet some of the people that they currently assist – those consumers can tell you about their personal experiences with the service provider. They can tell you about the quality of the services they receive and how they have been treated.
It’s also a good idea to ask to be taken to see some of the places where consumers the provider serves are living. You’ll be able to see for yourself whether they are in neighborhoods where you feel safe and comfortable, and if they are near shopping centers and bus lines, for example.
What if you don’t like any of the supported living service providers or you’re not quite sure? Ask your service coordinator to suggest more options for you to consider.
You’ve decided you plan to live in a licensed community care home, a foster home, or a home that provides special health care or habilitation services is the option for you.
How do you choose a licensed community care home, a family home, a foster care home, or a licensed intermediate care facility?
Your regional center service coordinator will probably give you a list of several homes you can visit to help you make your choice. Your service coordinator will select these homes based on talks that you have had about where you want to live and what kinds of services and supports you need.
It’s a very good idea for you to visit all the homes on the list. Remember, these are important visits — you may be seeing the place where you’re going to be living! You don’t have to go alone. You can take a family member or friend with you.
Since there are a lot of things to consider, we’ve also created a simple worksheet that you can print-out and use when you visit different homes. It includes specific questions to ask and will help you keep track of things you like and things you don’t like about each one.
It’s a good idea to ask the service providers in home questions about themselves, and about how they operate the home so you can see if it’s a place where you would feel comfortable and like to live. You’ll want to know about the house rules about all sorts of things, as well as how involved the consumers are in making decisions and choices about things like menu, social activities and other things that happen in the home. If you have a special diet or food needs, it’s important to make sure the home can meet those needs. You’ll also want to make sure you talk to the consumers who live in the home and ask them about themselves. They can tell you about their personal experiences in the home, and what they like and don’t like about living there. They can tell you about the quality of the services they receive and how they have been treated. When you look inside the home, you’ll be able to see for yourself whether the consumers living there have been able to have their own photos and pictures on the walls, for example, and whether you feel it would be a nice place to live — a place where you feel safe and comfortable, and that seems like “home.” What if you don’t like any of the homes or you’re not quite sure? Ask your service coordinator to suggest more homes for you to look at.
What are my rights? People with developmental disabilities have rights. It’s the law! The law is written in language that might be a little difficult to understand, so we’ve put the law into words that we hope will be easier to understand. As a person with developmental disabilities, you have the right to: • services and supports in the least restrictive environment which helps you become as independent and productive as possible; • dignity, privacy, and humane care in natural community settings as much as possible; • public education; • prompt medical care and treatment; • religious freedom and practice; • a social life and participation in community activities; • physical exercise and recreation; • be free from harm, including unnecessary physical restraint, isolation, medication, abuse, or neglect; and • be free from dangerous procedures. You also have the right to make choices in your life about things like: • where and with whom you live; • your relationships; • the way you spend your time (including education, employment, and leisure); and • plans for your personal future and what services and supports you need.
If you choose to live in a licensed community care home, an intermediate care facility that provides special health care or habilitation services, or a foster care home, or a family home agency home, you also have the right to: • wear your own clothes, and purchase and use your own things; • have storage space for your things; • see visitors; • be close to a telephone to make and receive private calls; • be given paper, envelopes, and stamps if you wish to write private letters and to receive private letters; • refuse shock therapy; • refuse behavioral therapy that causes pain or trauma; • refuse the kind of surgery that would change your brain’s intellectual or emotional functions; • make choices in your daily living routines, with whom you spend time, and leisure and social activities; • inform the regional center about how satisfied you are with your services (and have this information taken into account); and • actively participate in developing your Individual Program Plan (IPP) so that the services and supports you receive are based on your needs and wishes. If you choose supported living, you also have the right to: • choose where and with whom you live; • be in charge of the character of your home and the way it looks; • choose and change your vendors and direct service providers; • participate actively in developing your Individual Program Plan so that the services and supports you receive are based on your needs and preferences; • receive services appropriate to your changing needs and preferences without having to move from your home; • inform the regional center about how satisfied you are with your services (and have this information taken into account); • terminate (end) services without affecting your eligibility for other services from the regional center; and • receive information that will help you make important life decisions. 29
What should I do if I’m not satisfied with the services I receive? Quality Assurance Those are two very important words here at RCOC. What do they mean? When you talk about quality, you talk about how good something is. When you talk about assurance you talk about making sure of something. When we say that we do quality assurance at RCOC, we’re saying that we try to make sure that all of the services and supports that you receive are as good as they can possibly be. We do that by offering training sessions and workshops for service providers. We also have RCOC staff members who work closely with service providers to provide them with support and make sure that they’re delivering quality services and supports. We also have volunteers (consumers, family members, and friends) who work with RCOC staff members to review different services and supports. We hope that you’re pleased with your service provider and the services that you’re receiving, whether you live at home with your family, in a community licensed home, a foster home, a home that provides health or habilitation services, or in supported living. But things don’t always go exactly as they should. Unfortunately, that’s just the way life is sometimes...
Even when things go wrong and you are not satisfied with the services that you’re receiving, there are things you can do: 1. You can talk to your service provider about what you don’t like. 2. You can talk with the other people receiving services and see what they think and what they’d like to do to make things better. 3. You can call your RCOC service coordinator who can help you. Your service coordinator may speak to one of the RCOC staff members who works with service providers to make sure that services are the best possible. The most important thing we want you to know is that if you are not satisfied with the services and supports you are receiving, we at RCOC want to know because we are here to help YOU.
What do I do now? You’ve finished reading this guide. Are you ready to start planning for your future by creating your own vision? We hope so. Here’s a list of things to do to get started: 1. Call your service coordinator at RCOC and tell him/her that you want to make some plans for your future. Talk on the phone, or better yet, ask for a meeting with your service coordinator. 2. When you and your service coordinator meet, talk about putting together a Person-Centered Planning meeting(s). If you need some help doing that, your service coordinator will be glad to help you. 3. Hold your Person-Centered Planning meeting(s) with your Circle of Support. Be sure to include people who are an important part of your life. The more input and support you receive, the better your plan will be. Together you’ll look at all the options available for you as you work as a team to develop a plan. Your plan should be written so that there are definite steps for you and your circle of support to follow. 4. Follow those steps…and you’re on your way to achieving your vision! We hope that this guide is helpful to you as you look at your future. You have many options from which to choose. You have a whole world in front of you...your world!
1525 North Tustin Avenue Santa Ana, CA 92705 (714) 796-5100 www.rcocdd.com www.facebook.com/RegionalCenterofOC @RegionalCntrOC