Learning About Options

Welcome!Ligas Family Advocates A Program of :

April 24, 2014This is what The Arc of Illinois does:Public Policy AdvocacyThe Voice of the Disability CommunityEducation and TrainingAdvocacy Systems CoordinationLinkages to Support Groups and ServicesInformation and ReferralTechnical Support and AssistanceResearch and Model DisseminationConvene Networks and CollaborationSupport Progressive LegislationImproves Funding StreamsTo learn more about the work The Arc of Illinois, go to www.thearcofil.org2

Programs of The Arc of Illinois include:

Consumer Involvement Program Consumer Stipend Funds

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Established January 1, 20145

Missy Toni Kimberly ShirleyLFAS5Ligas Family Advocate ProgramLearning About OptionsWhere you live and receive services 2014!6

Ligas Family Advocate Program

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The Ligas Family Advocate Program has one purpose to connect recipients of Ligas award letters seeking Home Based or CILA services and their families with family advocates who are knowledgeable about creative ways to utilize their Ligas funding to build successful lives in the community. 78This program will initially focus on Ligas class members within the areas served by three Independent Service Coordination agencies: Community Service Options Inc. Developmental Disabilities Services Metro East Suburban Access.

Ligas Family Advocate Program FocusOur advocates will work closely with a designated representative from within each of these agencies, sharing information with families. Two of these agencies serve the greater Chicago area and the third serves the St. Louis metropolitan area.89What Information will be shared with Ligas Class Members and How?Information will be shared in face-to-face meetings, at trainings, atoutreach events and presentations, and through brochures and otherinformational documents.Information about the Ligas Consent Decree and the rights of class membersInformation about choices for living and receiving servicesThe history of, and current parameters for Home-Based Support Services Program and CILAInformation on Illinois Employment First legislation and resources for employment assistanceEffective advocacy strategies and resourcesPotential questions for use in choosing a service providerPerson-centered planning and self-determination information/resources

10What We Hope To AccomplishCollect data that identifies: Services needed but unavailable Observed trends Barriers to employment Barriers to successful development and implementation of an individuals service plan Level of consumer/family satisfaction with the Home-Based Support Services Program or CILA as implemented Descriptions of successful strategies used to reach individuals/families The end result of this data collection will be the ability to provide program data summaries and recommendations to both the Ligas Court Monitor and the Illinois Department of Human Services that will ultimately result in positive systemic change.Small or large?

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Have you ever thought about what your dream home might look like? Have you ever thought about what your dream home might look like? Would it be small or large?11Apartment or House?

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Which would you choose?An apartment or a house?12In a city or small town?

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In a city or small town?13Lots of shops or a park?

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What would your neighborhood look like? Would it have a lot of shops or a park?14Who would you live with or near?

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Who would you want living with you or nearby?15

What supports would you want?

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What sort of help would you want and need? These are some of the questions that almost everyone thinks about.16Right now!

17Where else could I be living and still have the safety and supports I need? 17Ligas v. Hamos

18Picture from http://news.meddilll.northwestern.edu/chicago/news.aspz?d=106795In 2005, Stanley Ligas and David Cicarelli and 7 other people filed a class action lawsuit, now you may have some other options. Because in 2005, Stanley Ligas and David Cicarelli and 7 other people filed a class action lawsuit, you may have some other options. Mr. Ligas and Mr. Cicarelli wanted to receive services in a home in the community rather than in an Intermediate Care Facility or ICF. Mr. Ligas had lived at Sheltered Village in Woodstock, Illinois for 14 years. He wanted to live closer to a family member, learn how to cook, and get away from the noise. The home he lived in was licensed for 95 people. He had requested to move from his ICF to a home in the community - but his request was not granted. He was not able to move - because there was no funding for him in the community.

David Cicarelli (pictured here with his father) had lived in an ICF since 1997. In a newspaper article (Daily Herald, June 15, 2011 by Burt Constable), Mr. Cicarelli said he wanted his life to be differenthe wanted to live closer to his parents, get a part-time job, have a kitten, decide the color of his bedroom, buy a punch bowl, keep diet pop in the fridge, watch Sanford and Son with the volume cranked and eat dinner when he wanted instead of being served at 4:45 pm every day.

http://news.medill.northwestern.edu/chicago/news.aspx?id=106795

18Homes in the Community

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Six years later, in 2011, the state of Illinois and the people in the lawsuit reached an agreement called a Consent Decree. This Consent Decree supported Mr. Ligas desire to move. He and Mr. Cicarelli now share a home in the community. Six years later, in 2011, the state of Illinois and the people in the lawsuit reached an agreement called a Consent Decree. This Consent Decree supported Mr. Ligas desire to move. He and Mr. Cicarelli now share a home in the community. The Consent Decree included opportunities for other people like them to explore different living options.

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Home and Community Based Waiver

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Thanks to a program called the Home and Community Based Waiver or HCBS Waiver, the supports you need can be provided in other settings.

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Options

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Lets say you need an assistant to help you clean your room or you need a driver to take you to a job or shopping, or you need medical assistance, you can probably receive those same services in other living options. These living options might be in your family home, a group home, a host home or your own home.21Your Rights:22You have rights as a class member to have a say in where you live, have the information to make a choice, Take the time you need to make a choice. You have the right to be listened to. You have the right to live and receive services where you want and you have the right to change your mind.

22You can make a choice to23As a class member you can decide that you want to continue living in the same home you live in now, you could explore services at another home. You could decide to explore the other options you have to live and receive services through the Home and Community based waiver program.

Although we hope you will learn about your options during our discussion today, you may certainly take more time or ask for more information before you make a decision.23Basic Needs and More

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Services can include supports to keep in touch with family, have opportunities for hobbies and exercise, and help you buy and do things you enjoy.In addition to ensuring that you stay healthy, and that your basic needs are met, services can include supports to keep in touch with family, have opportunities for hobbies and exercise, and help you buy and do things you enjoy.24Supports and Services 25People in the community typically receive needed and wanted services and supports based on their personal goals, preferences and needs and their current supports.

There are many services available in the waiver and include

Living Options which are designed to help people live in safe places with the supports they need and want to be healthy and happy.Day and Employment Supports so that people work or participate in programs to help them meet personal goals for working and learning.And other Support Services to help people be successful at home, work and community.2526There are two types of supported living arrangements.

The first is called Community Integrated Living Arrangements, or CILAs, and the second is called Home-Based Services.

CILA services are bundled so that a person receives supports at home and could be employed or participates in a day program. Lets concentrate on living optionsCILA as a Living OptionEveryone who receives CILA services also receive day or employment services

EmploymentDay ProgramAdult Day CareIn Home Support

May receive other supports based on Service Plan27Lets concentrate on living options

There are two types of supported living arrangements. The first is called Community Integrated Living Arrangements, or CILAs, and the second is called Home-Based Services. CILA services are bundled so that a person receives supports at home and is employed or participates in a day program. 27Home Based Supports as a Living OptionChoose from a menu of services and supportsLive with family, friends or independently

May choose day supportsMay choose supports at homeMay choose other supports to enhance success

All based on personal needs and within budget28564231In Home-Based Services, the person lives with family, friends or independently and chooses the services they need and want to meet their personal goals based on their personal needs and within their budget.

The difference is a lot like the difference between a chef making your meal and you deciding to cook your meal. In both cases you start with more or less the same ingredients --- your various service needsbut in one you are letting another person put all of the ingredients together. In the other, you are responsible for choosing what is served.28Service Planning

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In both CILA and Home-Based services, you will work with an agency called a Pre-Admission Screening (PAS) Agency/ Individual Service Coordination agency (ISC). The agency will assign an Independent Service Coordinator to work with you to develop a Service Plan.In both CILA and Home-Based services, you will work with an agency called a Pre-Admission Screening (PAS) Agency/ Individual Service Coordination agency (ISC). The agency will assign an Independent Service Coordinator to work with you to develop a Service Plan. Your Service Coordinator will work with you to be sure you have good accurate information about your living options and how the supports can be provided in these settings. The Service Coordinator is an expert on all of the community living options that you might be eligible for. They will work with you and your family or other supporters all the way through your transition process. They will help you develop your transition service plan, help you visit and select providers, and check in regularly to make certain you have everything you need.

Remember the top job of people at the PAS/ISC agency is to help you find the home that is best for you. They are there to help you stay safe and healthy and as independent as possible. 29Residential Services- CILA Options:30

Now lets take a closer look at the CILA option. Within the CILA type of setting, there are four different types

Group Home ServicesHost Family ServicesFamily Home ServicesAnd Intermittent Services.30Group Home

31When a person lives in a group home, they share the home with other people who also receive services. All of the people in the group home receive services through a state approved CILA agency that owns or rents the home. When a person lives in a group home, they share the home with other people who also receive services. All of the people in the group home receive services through a state approved CILA agency that owns or rents the home. The agency is responsible for arranging all of the supports described in your service plan. Typically there are staff there 24 hours a day, seven days a week.31Host Family Home

32Here a family not related provide supports in their home. With help from a state licensed CILA agency, the host family arranges all of the supports described in your service plan. Another CILA option is the Host Family Home. Here a family not related provide supports in their home. With help from a state licensed CILA agency, the host family arranges all of the supports described in your service plan. The CILA agency pays the host family to make sure you have all that you need and the family includes you in activities in and out of the home.

32Support and Supervision

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In a Group Home and Host Family Home, you have 24 hour paid support 7 days a week. In Group Home and Host Family Home, you have 24 hour support 7 days a week. In the group home this round the clock support comes from the staff of a licensed CILA agency. In the Host Family Home, the support comes from the family that you live with.

33Family Home

34There are two other CILA options where the person does not have round-the-clock paid support. One is Family Home. There are two other CILA options where the person does not have round-the-clock paid support. One is Family Home. If you have family that would like to live with you, that might be an option. Here, you live with your actual family , who is assisted by a CILA agency to manage all the services described in your service plan. The agency works closely with you and your family to make sure that everything is working well in the arrangement.34Intermittent

35The other option is intermittent services. You live alone, with family or friends. You are usually making independent decisions about many things like when you pay your bills or where you want to live. The CILA supports you receive are for specific tasks .In intermittent service, you live alone, with family or friends. You are usually making independent decisions about many things like when you pay your bills or where you want to live. The CILA supports you receive are for specific tasks such as nutrition planning, shopping, and money management. The CILA agency working with you makes sure you are receiving the services that satisfy your service plan.35

Licensed CILA Providers

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The state is responsible for ensuring that all CILA providers are qualified to provide services. The state is responsible for ensuring that all CILA providers are qualified to provide services. They have to follow many rules and are routinely monitored to ensure they meet those rules. One of the most important rules is around staff training. All direct support staff have to have at least 120 hours of training in their expected duties and be certified in first aid and CPR. They are trained to recognize and respond to any allegations of abuse and neglect and to ensure your rights are protected. Staff must complete classroom and on the job training to demonstrate they are qualified to provide supports.36Home Based Services37

Now lets take a closer look at the Home Based Services option. With this option you manage your own services with the help of your family and friends.Now lets take a closer look at the Home Based Services option. With this option you manage your own services with the help of your family and friends. You might live with family, friends or on your own. You choose what supports and services you want and where you want to purchase each supports and services from a menu of services. For example, you may choose to purchase some from an agency, or you may decide to individually hire and train your own direct support workers. You work with the Service Coordinator and a person called a Service Facilitator to develop your plan and to identify and select providers and to stay within your budget. The Service Coordinator and Service Facilitator help you monitor services. If you choose to hire your own support workers, you work with a fiscal intermediary to pay the workers.

3738You work with the Service Coordinator and a person called a Service Facilitator to develop your plan and to identify and select providers and to stay within your budget.

You may choose to live with family, friends or on your own.

You choose the supports and services you want from a menu of services, and where you want to purchase each support and service.

The Service Coordinator and Service Facilitator help you monitor services.

If you choose to hire your own support workers, you work with a fiscal intermediary to pay the workers.

New possibilities?Home Based Services OptionsMenu of Services39Remember how we compared Home Based Services to making your own meal instead of having a chef make it for you? In CILA, the agency would be responsible for your services and the cost would be included in the bundle of services you receive. In Home Based you choose the individual service and supports you want. In Home Based you would choose what you needed and wanted and purchase each part individually. We will tell you briefly about those options for employment and day services next and then support services. In CILA many of the services are bundled into the CILA service; while the Home Based services are individually selected.39Employment and Day40During the day, people in Home Based Services may choose, if they want, to purchase services to help them reach personal goals. People in CILA will participate in work or day programs as part of their bundled services. People may work in the community, receive supported employment services to help them get or keep a job, or work in a sheltered workshop. People may participate in day programs based on their interests and skillssome will participate in Developmental Training, others in Adult Day Care and others in In Home Day services. 40Support Services41The Support Services are grouped in to help them make senseservices at home are generally only available as separate services for people in Home Based Services and provide the support needed to help people living with their families or on their own.

Health Care supports are generally included in the CILA bundle and are an individual service in Home Based. Nursing Services are provided in accordance with the Nurse Practice Act. Many direct supports such as medication administration are completed by trained direct support staff while the nurse assesses, monitors and performs other activities that require a nurse.

Therapy services help the person to gain or improve independence at home, work and in the community. It is a separate waiver service for all people participating in the waiver and is based on assessed needs.

Equipment and Modifications are those services that help a person. Foe example--adaptive equipment such as silverware adapted to their needs, mobility aids such as walkers and wheelchairs. Assistive Technology are those tools and gadgets that help a person to do things that are impossible or difficult without itusually its a communication device. Home Accessibility and Vehicle Modifications are changes made to the home or vehicle to help the person get into or out of the home or vehicle, like a ramp.

41DecisionsIf you decide toThenStay in the same home you live in nowExplore other options within the programExplore options outside of what you nowGet more informationTake more time

You do

Connect with other families

We refer you to the PAS/ISC agencyWe refer you to PAS/ISCWe call you back42This presentation is to give you a basic overview of the types of services available to you.

Now what do you want to do?42AcknowledgementThe Family Support Network/Arc Ligas Family Advocate Program would like to acknowledge that many of the slides/information used in this PowerPoint were created by and are used with the permission of:

CQL Outreach ProjectCathy Yadamec, Project Manager 866.662.2225 or 217.718.4029 PO Box 53, Woosung, IL 61091-0053

434344Contact Information:Shirley A. Perez, Executive DirectorFamily Support Network708-331-7370Shirley@FamilySupportNetwork.orgwww.familysupportnetwork.org45Department of Human ServicesDivision of Developmental Disabilities319 E. Madison Street, Suite 3MSpringfield, IL 62701-1305Phone: (217) 785-6171Email: Troy.Markert@illinois.govOrYou may contact the federal Court Monitor for the Ligas Consent Decree:Mr. Tony RecordsPhone: 301-529-9510Email: traconsult@mindspring.comLigas Contacts4546Equip for Equality provides self-advocacy assistance, legal services, education, public policy advocacy, and abuse investigations. The offices are located at: 20 N. Michigan, Ste. 300Chicago, IL 60602(800) 537-2632

1 West Old Capitol Plaza, Ste. 816Springfield, IL 62701(800) 758-0464

Guardianship and Advocacy Commission is a state agency consisting of three divisions: Legal Advocacy Services, Human Rights Authority and the Office of the State Guardian. 160 N. LaSalle Street, Suite S500Chicago, IL 60601(312) 793-5900

521 Stratton Building401 S. Spring StreetSpringfield, IL 62706(217) 785-1540

Ligas Contacts47

QUESTIONS?