Services for Children and Youth with Dual Diagnoses. Finding and accessing services for Kansas consumers

Transcription

1 Services for Children and Youth with Dual Diagnoses Finding and accessing services for Kansas consumers

2 This document was written and prepared by: Kristen R. Humphrey, LMSW, Ph.D. This document is supported by the Parent Empowerment Project, a collaborative effort of: Kansas Department of Social and Rehabilitation Services Families Together, Inc. The Beach Center on Disability The development and dissemination of this document is supported by a grant from the Administration on Developmental Disabilities, Grant No. 90DF0037. Information in this document was accurate as of June, 2003.

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4 Inside this booklet Overview...1 What is a dual diagnosis?...2 Does my child have a dual diagnosis?...2 What is a developmental disability?...2 Does my child have a developmental disability?...3 What is a mental health diagnosis?...3 Does my child have a mental health diagnosis?...4 My child has a developmental disability and a mental health diagnosis. What services are available?...5 Providers of Services...5 Community Developmental Disability Organizations (CDDOs)...6 How does one access services through the CDDO?...7 Community Mental Health Centers...8 How does one access services at a Community Mental Health Center?...9 The Public Schools...10 How does one access services through the public schools?...10 Kansas Department of Social and Rehabilitation Services...12 (SRS)...12 Vocational Rehabilitation...13 How does one access Vocational Rehabilitation Services?...13 SSI...14 Community Agencies and Organizations...15 Private Providers...15 Does my child need to enter state custody in order to receive services?...16 I am a foster care provider of a child who has a dual diagnosis. What do I need to know?...16 Menu of Services...19 Glossary of Terms...45 Family Quality of Life Survey and Worksheet...49

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6 Part 1 Explanation of Dual Diagnoses and Description of Service Providers Overview This booklet contains information about services available for children and youth who have dual diagnoses a developmental disability and a mental health diagnosis. In Part 1, you will find information that describes: agencies and organizations that provide services to individuals with developmental disabilities and/or mental health diagnoses, services provided by these agencies and organizations, eligibility criteria for these services, the process for accessing these services, and information regarding where to go for help if you have trouble accessing services or if you have concerns about the quality of services. When you come across a word that is underlined, you will find more information about it in Part 2. Part 2 is a menu of services that includes information about types of services, providers of services, and where to access particular services. The menu of services also includes information about services and organizations that are not described in Part 1, so you might find it helpful to browse through this section. Finally, in Part 3, you will find a glossary of terms that are used in this booklet. Words that are included in the glossary are underlined and italicized. Look for the for an indication of how long you might expect it to take to get a service started once you contact an agency. Look for the for helpful hints. 1

7 What is a dual diagnosis? The term dual diagnosis is a common, broad term that means that a person has two medical disorders that are independent of each other. In this booklet, we are talking about individuals who have a developmental disability and a mental health diagnosis. Does my child have a dual diagnosis? If your child has a developmental disability and a mental health diagnosis, he or she has a dual diagnosis. What is a developmental disability? In Kansas, a Developmental Disability means that a person has: (1) Mental retardation Or that they have: (2) A severe chronic disability that is a result of a mental or physical impairment that is present before the age of 22 and is likely to continue indefinitely. This disability must cause a substantial limitation in at least 3 of the following areas: Self-care, receptive and expressive language development and use, learning and adapting, mobility, self-direction, capacity for independent living and economic self-sufficiency. 2

8 Does my child have a developmental disability? If your child has mental retardation, he or she has a developmental disability. If your child meets the criteria listed above in number 2, he or she may meet the criteria for developmental disability in Kansas. If you think your child meets the criteria above, but your child has not been assessed, you might want to have an assessment done to determine if your child is eligible for services. In Kansas, many services depend on the Community Developmental Disability Organization s (CDDO s) determination of whether or not an individual has a developmental disability. They use the criteria described above. What is a mental health diagnosis? Sometimes when a person is having emotional trouble or behavior challenges, he or she goes to a doctor, a counselor, a social worker, or another such mental health practitioner for help. Many types of emotional troubles or behavior challenges are common enough that they have been given a name. These names are types of diagnoses. When a doctor or other mental health practitioner learns about the symptoms or challenges that a person is having, he or she might decide that the person has a certain diagnosis (or more than one diagnosis). 3

9 Does my child have a mental health diagnosis? If your child has seen a doctor or other mental health practitioner about emotional or behavioral challenges, he or she might have a mental health diagnosis. If you are unsure, ask the person who met with your child or contact the agency where you took your child. They should tell you if they assigned a diagnosis to your child. Examples of mental health diagnoses are Major Depressive Disorder, Obsessive-Compulsive Disorder, Attention Deficit Disorder, Bipolar Disorder, Oppositional Defiant Disorder, Conduct Disorder, anxiety disorders, phobias, and eating disorders. (These are the most common mental health disorders of childhood. However, this is just a short list of examples; there are many more diagnoses.) Some services in Kansas require that a child meet the state s criteria for Serious Emotional Disturbance (SED). The State s criteria follow: A child or adolescent with Serious Emotional Disturbance or (SED) means one who: Is under the age of 18, or is under the age of 22 and has been receiving community based mental health services prior to the age of 18 that must be continued for optimal benefit; and Currently has a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet the diagnostic criteria listed in the most current DSM; Disorders include those listed in the most current DSM with the exception of DSM IV V codes, substance abuse or dependence, and developmental disorders, unless they co-occur with another diagnosable disorder that is accepted within this definition; and Has a functional impairment, which substantially interferes with or limits the youth s role or functioning in family, school, or community activities. If your child is over the age of 18, the mental health center may require that he or she meet the criteria for Severe and Persistent Mental Illness (SPMI). 4

10 My child has a developmental disability and a mental health diagnosis. What services are available? There are services available for individuals with developmental disabilities and for individuals with mental health diagnoses. The following pages will explain what services are available and how to access them. Providers of Services The next section of this booklet describes 7 providers of services. Under each category, you will find a description of the agency, organization, or entity, information about eligibility criteria, and information explaining how to access the services. Providers of Services: Community Developmental Disability Organizations Community Mental Health Centers Public Schools Department of Social and Rehabilitation Services Social Security Income Benefits Community Agencies or Organizations Private Entities 5

11 Community Developmental Disability Organizations (CDDOs) The CDDO helps people with disabilities receive needed supports and services. At times, they provide services, but the services can be provided by other agencies as well. The CDDO will: Determine if your child is eligible for services Tell you about the types of community supports that are available Assist you in getting the supports you prefer CDDOs serve individuals who have mental retardation or a developmental disability that was present before the age of 22 and that is likely to continue indefinitely. The disabilities must result in limitations in three or more areas of life functioning. Individuals who have dual diagnoses may qualify to receive services through the HCBS-MRDD Waiver. Those who have a mental health diagnosis, but not mental retardation or a developmental disability do not qualify. They are served through the Community Mental Health Centers. The CDDO is the place to contact to find out if your child qualifies for the HCBS-MRDD Waiver. 6

12 How does one access services through the CDDO? There are 28 CDDOs in Kansas. Contact the CDDO in your area to find out if your child qualifies for services. Once you contact your CDDO, you will provide information to a CDDO staff member who will determine whether your child meets the state s definition for developmental disability. You will be asked to complete, or to help your child complete, several forms and release of information forms. Someone from the CDDO will review the information and will want to meet with you and your child as part of the process. Be prepared to share information about your child s type of disability, severity of the disability, and the date of on-set of the disability. If you have copies of diagnoses from other professionals, such as school records or medical records, bring those along. You may also be asked for financial information and information about guardianship. The CDDO personnel will also ask about your child s abilities to do various tasks and whether he or she has challenging behaviors. As difficult as it may be, be prepared to lay everything on the line and honestly report what your child s needs are. If the CDDO determines that your child does meet the state s definition for developmental disability, the CDDO will work with you to determine what supports and services need to be provided. If a CDDO has evaluated your child and determined he or she does not meet the criteria for developmental disability, and you disagree, you may request another CDDO to review your child s file. This must be done within 30 days. If they still determine that your child does not meet the criteria for developmental disability, you may follow the appeals process. If your child is not determined eligible, the CDDO should refer you to other agencies or resources that may be able to assist your child. Other resources your child may be able to access may include services through the Community Mental Health Center, Vocational Rehabilitation or the Centers for Independent Living. 7

13 The eligibility process may take several weeks. If there are delays, it usually involves delays in receiving documentation regarding the child's disability. Even if your child qualifies for services, there may be a waiting list of over a year. If your child is in crisis and his or her needs can only be met through the HCBS-MRDD waiver, the CDDO may allow your child to access HCBS-MRDD services right away for up to 90 days. At that time, the CDDO will reevaluate and determine if these services are still appropriate. Community Mental Health Centers Twenty-seven Community Mental Health Centers (CMHCs) are available across the state to address the mental health needs of children and adults. The Kansas Mental Health System offers a range of in-home and community based supportive services to children with Serious Emotional Disturbance (SED) and their families. They also provide traditional outpatient clinical care. The goal is to provide supportive services necessary for children to be maintained in the least restrictive setting possible, preferably at home with their families. The services are strengths-based and target the child with a serious emotional disturbance, but the focus of intervention and/or support typically includes the family and upholds the belief that the best way to provide services to a child is through strengthening and empowering the family. Community Mental Health Centers are mandated to provide services regardless of a family s ability to pay. Charges for mental health services are based on a family s income and take into account other payment sources such as private insurance, Medicaid, the HCBS-SED waiver, and a sliding fee scale, which includes a Family Fee to parents whose children are receiving HCBS services. 8

14 Community Based Services (CBS) include, but are not limited to: Case Management Parent Support Services Wraparound Facilitation Home-Based Family Therapy Attendant Care Psychosocial Group Respite Care School-Based Services How does one access services at a Community Mental Health Center? You may contact the local CMHC in your area to request services. Someone at the mental health center will talk to you about services they provide. For many children, traditional mental health services may be enough to meet their mental health needs. These services include Individual, Family and /or Group Therapy, Medication Management, Consultation, and Education. These services are usually provided at the mental health center. Children and youth who meet the criteria for Serious Emotional Disturbance (SED) may require more intensive community based mental health services. The CMHC will schedule an intake assessment for you and your child. A qualified mental health professional (QMHP) will determine if your child meets the criteria for SED and help you decide which communitybased services your child should receive. Accessing services at the mental health center can range in time from as little as 3 hours to 14 days. In an emergency situation, a face-to-face assessment must be completed within 3 hours. In an Urgent situation, a face-to-face assessment must be completed within 72 hours. In a routine situation, an assessment must be completed within days. For children who are identified as SED, treatment must begin within 10 working days of the assessment. 9

15 The Public Schools If your child has a developmental disability or emotional or behavioral disability, he or she might qualify for special education services or a 504 plan through the local public school. Special education services may include education in the general classroom and/or in a resource room. It may also include related services such as transportation, school social work services, speech and language services, occupational therapy, and adaptive physical education. The services provided depend on the individual child s needs and are available up through age 21 depending on individual needs. How does one access services through the public schools? To find out if your child qualifies for special education services, call or write a letter to your school s principal or your school district s Director of Special Education and ask for a special education evaluation. Tell him or her about your child s disability and ask for an evaluation to take place as soon as possible. The school may agree that your child needs to be evaluated. Or, they may disagree and refuse to conduct an evaluation. If so, the school must notify you in writing that they will not conduct an evaluation and explain why they made this decision. If the school refuses to conduct an evaluation, you may ask the school system for information about its special education policies. These materials should provide you with the steps you can take to challenge the school system's decision. You may also call Families Together or Keys for Networking. Among other things, Families Together and Keys for Networking provide information about accessing special education services. 10

16 If the school does conduct an evaluation but determines that your child does not qualify for special education services, the school must notify you in writing. If you disagree, you may ask the school system for information about its special education policies to find out about the steps you can take to challenge the school system's decision. Again, you may call Families Together or Keys for Networking for advice and assistance. After you request a special education evaluation and sign consent for an evaluation, the school has 60 school days to complete the evaluation. If the Individual Education Plan (IEP) team determines that your child is eligible for services, the school has 30 calendar days to meet and develop an IEP. Once the IEP is developed, the school has 10 school days to begin services. For more information about accessing special education, see: Some children and youth who do not qualify for special education services qualify for a 504 Plan (sometimes called Section 504 Services ). This is similar to the IEP document that is developed when a student receives services from special education. A 504 plan can be used to help a student who has a disability, but who does not qualify for special education services. To request a 504 plan, write a letter to the school principal. Tell him or her about your child s disability and ask for an evaluation to take place as soon as possible. 11

17 Kansas Department of Social and Rehabilitation Services (SRS) SRS is the Department of Social and Rehabilitation Services. SRS offers a variety of services (either directly or by contracting with others) including, but not limited to, vocational rehabilitation, family services, family preservation, child protective services, foster care and adoption, adult protective services, food assistance, general assistance, Medicaid, and temporary assistance to families (TAF). To find out if your child will qualify for services through SRS, contact your local SRS office. Some of these services (such as general assistance, food assistance, or Medicaid) may be helpful to youth who are working on a transition out on his or her own. The service that will likely be most relevant to individuals with dual diagnoses is Vocational Rehabilitation. Therefore, information about Vocational Rehabilitation will be presented next. 12

18 Vocational Rehabilitation Some people with disabilities qualify for Vocational Rehabilitation services. These services are set up to help people find employment that will help them achieve independence. Services may include: vocational assessment counseling and guidance physical and mental restoration training rehabilitation technology job placement supported employment transition planning services for students with severe disabilities. How does one access Vocational Rehabilitation Services? To find out if your child will qualify for Vocational Rehabilitation (VR) Services contact your local SRS office and ask for Vocational Rehabilitation or Voc Rehab. To qualify for VR services, a person must: 1. have a physical or mental impairment that results in a substantial impediment to employment; 2. be able to benefit, in terms of an employment outcome, from VR services; and 3. require VR services to prepare for, secure, retain or regain employment. An individual who receives Supplemental Security Income (SSI) or Social Security Disability Income (SSDI) automatically qualifies for VR services unless there is evidence that he or she will not be able to benefit from services. 13

19 More information can be found at: disability.htm It may take up to 60 days to determine if your child is eligible for services. Even if your child is eligible, there is a waiting list for services. If you have trouble accessing Vocational Rehabilitation Services, you may contact the Client Assistance Program at SSI Supplemental Security Income benefits (SSI) are available to individuals who have disabilities and who meet income requirements. SSI benefits for children with disabilities are paid to children who are under 18 years old, have a disability, and their parents or guardians meet income requirements. To qualify for SSI, a child under 18 years old must have a physical or mental disability that can be verified by a medical professional. This disability must cause severe limitations in the child s functioning. The disability must be expected to last at least 12 months or to result in death. Individuals over the age of 18 must meet SSI s definition of disability. The individual must be unable to earn a substantial income because of their mental or physical disability. This disability must be expected to last at least 12 months, to have lasted at least 12 months, or to be expected to result in death. To apply for SSI, call An SSI representative will make an appointment for your application to be taken over the telephone or at a Social Security office. If your child is denied SSI benefits and you disagree, you may appeal the decision within 60 days. 14

20 Community Agencies and Organizations There are many community agencies and organizations available to people with various disabilities. Some are statewide organizations, while others are part of local communities. Some provide services, and others provide information, support, and referral. It is worth looking into the community agencies and organizations in your area. You may find agencies and organizations by checking with other parents, asking people at your child s school, checking with local religious organizations, or checking with your local United Way office. You might look for services that provide information and referral, advocacy, transportation or recreational activities for individuals with disabilities, and support groups for individuals with disabilities and/or their families. Private Providers Your community may have private providers who provide services to individuals with mental health diagnoses and/or developmental disabilities. For example, you may choose services provided by your family physician, your child s pediatrician, a private therapist, someone trained in applied behavior analysis, an occupational therapist trained in sensory integration techniques, or therapies such as equitherapy (also called hippotherapy, horse therapy, or therapeutic horseback riding), hydrotherapy (water therapy), music therapy, massage therapy, or osteopathy. Again, a good way to find out what is available in your area is to check with other parents, ask people at your child s school, check with local religious organizations, or check with your local United Way office. 15

21 Does my child need to enter state custody in order to receive services? No. Children should not enter the custody of the state solely to obtain needed services and supports. Both the developmental disabilities and mental health systems have plans for responding to crises and providing appropriate supports. The goal of these services is to keep the child in the least restrictive setting, preferably that child's home, and to keep families together. Children should not enter the custody of SRS for any other reason than for abuse, neglect or exploitation. I am a foster care provider of a child who has a dual diagnosis. What do I need to know? Developmental Disability Services If the child in your care is 16 or older and he or she has a developmental disability, he or she should have been referred to the CDDO to determine eligibility and to start the process of helping him or her transition to adult services. If you are unsure if this has been done, check with your foster child s case manager. It is often difficult to access the HCBS-MRDD waiver because of long waiting lists. However, the CDDOs may go over their limit of individuals on the waiver if: 1. The child or youth needs residential services while in SRS custody, or 2. The youth is being released from SRS custody as part of a permanency plan in transitioning to adult services at the age of 18 or older, or 3. The child or youth has been determined to be in crisis. 16

22 Mental Health Services Children and youth who are in foster care, and who meet the criteria for SED, receive the following services from Community Mental Health Centers: Psychological evaluation Psychiatric consultation Medication management Emergency services Individual, family and group therapy Case consultation They may also receive community based services including: Community case management (Community psychiatric support, Targeted case management, Psychosocial services) Individual community support Home based family therapy Attendant care Partial hospitalization When a child who has SED and who is already receiving services from his or her Community Mental Health Center enters out of home placement, the child s current services should not be interrupted or discontinued. The medical card will allow him or her to continue to receive CMHC services. Children and youth who are in foster care, but who do not meet the criteria for SED are entitled to needed mental health services through the foster care contractor. The foster care contractor may provide the services or subcontract with others for the services. The foster care contractors must also provide for or subcontract for Behavior Management services. 17

23 Medicaid Every child who is in the State s custody receives a medical card for Medicaid services. Special Education If the parental rights of a child in your care have been terminated, or if the child s parents are unknown or unavailable, the child should have an Education Advocate appointed. The Education Advocate attends IEP meetings, participates in the development of the child s IEP, and protects the child s rights in identification, evaluation, and educational placement of the child. If you believe a child in your care should have an Education Advocate, but does not have one, contact your foster child s case manager. 18

24 Part 2 Menu of Services The next section includes a glossary of services. Services that individuals or families might wish to obtain are listed. You will find a brief description of the service and information regarding how to access the service. 504 Plan/Section 504 Services A 504 plan is a legal document that was developed as part of the Rehabilitation Act of Its purpose is to design an individual plan for students who have special needs who are served in a general education setting (as opposed to being served by special education). 504 plans are accessed through the public schools. Adult Protective Services SRS offers protective services to vulnerable adults (age 18 and above) to prevent or stop abuse, neglect, exploitation, or abuse of the vulnerable adult s money or resources. Vulnerable adults are those who are unable to protect themselves, are harmed or threatened by other s actions or neglect, or are in danger of harming themselves through their own actions or inactions. If you suspect that a vulnerable adult is at risk, you can get help for them by calling the Adult Protective Services toll free hotline at

25 Applied Behavior Analysis ARC Applied Behavior Analysis (ABA) is an intervention that teaches desired behaviors and phases out undesired behaviors. This intervention is sometimes used with children with autism and other pervasive developmental disabilities. ABA may be obtained by contacting a private therapist trained in ABA. The ARC is a National Organization on Mental Retardation. Services provided by the ARC vary from one location to the next. (Some provide basic information and referral, while others provide services such as respite care and case management.) Contact the ARC nearest you for more information: The Arc of Central Plains Box 163 Hays, KS The Arc of Douglas County 2518 Ridge Court - Rm 238 Lawrence, KS The Arc of Leavenworth County 215A Delaware Leavenworth, KS Topeka Arc 2701 SW Randolph Ave. Topeka, KS The Arc of Sedgwick County, Inc 2919 W. Second Street Wichita, KS

26 Assistive Technology Assistive technology devices are items or equipment that are used to increase, improve, or maintain the capabilities of individuals with disabilities. These items can be very simple and basic, such as a jar opener, or more technical, like a special computer program. Kansas has 5 Regional Access Sites that help people find out about Assistive technology resources in their region. To contact the Access Site in your region, call KAN DO IT ( ). The Interagency Equipment Loan System allows Kansas consumers to borrow a variety of assistive technology devices in order to determine if they meet their needs before purchasing devices. Some devices have waiting lists, so items may not be immediately available. An on-line catalog is available at their webpage ( To request an item, you must fill out a form (available at and mail it to: Interagency Equipment Loan System Kathy Reed PO Box W Schilling Rd Salina KS The Kansas Assistive Technology Cooperative (KATCO) provides people with disabilities and their families access to financial resources to acquire assistive technology through education, savings, and borrowing. 21

27 For more information on KATCO, contact their office at: Kansas Assistive Technology Cooperative (KATCO) 625 Merchant, Suite 210 Emporia, KS Public schools sometimes have Assistive technology devices for special education students to use as well. Attendant Care Attendant care is a service that provides supervision and company for an individual who needs this level of support to maintain his or her independence. The level of service depends on an individual s needs. An individual might need a few hours of attendant care at a time, or up to 24 hours a day in some residential or group home settings. Attendant care can be accessed through your local mental health center or through the CDDO if eligibility requirements are met. Behavior Management Behavior management is a type of treatment that is used to change or maintain a specific behavior. The foster care contractors provide behavior management services for some children and youth in foster care. If you are a foster care provider, contact your foster child s case manager if you are interested in behavior management services. (See also Positive Behavioral Support) 22

28 Case Management Case management services are intended to help an individual or family access and coordinate a variety of services such as housing, employment, or community resources. Case management is available to children and families involved in the child welfare system. Case management services are also available through the Community Mental Health Centers for children identified as SED and through CDDOs for those who are eligible. Centers for Independent Living (CILs) The Centers for Independent Living (CILs) provide services to people with disabilities of all ages. 13 CILs serve Kansans with disabilities. They also provide assistance to businesses and all other entities in the community to assist them in offering services to people with disabilities. They advocate at a state and national level for the rights of all people with disabilities to live in the communities of their choice. Examples of services that CILs may provide include: Advocacy for individuals Advocacy for systems changes Training to develop independent living skills Assistance to obtain affordable and accessible housing Communication services Peer counseling Legal advocacy Contact the Kansas Association of Centers for Independent Living to find the CIL closest to you. Kansas Association of Centers for Independent Living 1423 West Crawford Salina, Kansas

29 Child Protective Services SRS is the state agency that Kansas relies on to receive reports of suspected child abuse, neglect, and exploitation and to investigate these reports. SRS also takes reports about children who are not abused or neglected, but who are considered out of control (for example, children who are a danger to self or others or who are under the age of 13 and are truant). Reports may be made to any SRS area office by calling your local SRS office or by calling the state's Children and Adult Protection Report Center at (Reports made to this number are forwarded to the area SRS office for investigation.) SRS must make a "finding" on each investigation which will inform a caretaker that the agency has determined that a child was abused or neglected, or they were not abused or neglected. Client Assistance Program The Client Assistance Program (CAP) serves as an ombudsman (someone who investigates complaints) for applicants and consumers of vocational rehabilitation and independent living services. CAP provides information and referral, alternative dispute resolution, assistance in appealing agency decisions, Americans with Disabilities Act (ADA) information, community resource development, outreach to unserved and under served persons, and advocacy. Client Assistance Program 3640 Southwest Topeka Boulevard, Suite 150 Topeka, Kansas (Kansas residents only) (Fax) 24

30 Community Developmental Disability Organization -- CDDO A CDDO is a Community Developmental Disability Organization. The CDDO is an organization that is responsible for helping people with developmental disabilities access needed supports. In some areas, CDDOs provide services, while in other areas, the CDDO refers consumers to other agencies who provide the services. Call your local CDDO to find out what they offer. You may call Families Together (see numbers on pages 26 and 27) to find the CDDO that serves your area. A map and listing of CDDOs are located at: Community Mental Health Center The Community Mental Health Centers (CMHCs) are available across the state to address the mental health needs of children and adults. Community Mental Health Centers are mandated to provide services regardless of a family s ability to pay. Charges for mental health services are based on a family s income and take into account other payment sources such as private insurance, Medicaid, the HCBS-SED waiver, and a sliding fee scale, which includes a Family Fee to parents whose children are receiving HCBS services. Call to find the mental health center in your area. You will also find a listing of the mental health centers at Counseling Counseling is available in many areas and for many issues. Generally, it focuses on an individual s or a family s mental health, the relationships between family members or other individuals, or an individual s behavioral challenges. Counseling may also be related to specific settings such as academic counseling in a school or career counseling in a Vocational Rehabilitation setting. 25

31 Emergency Services Emergency services provided by the Community Mental Health Centers include a screening to decide if an individual needs inpatient care. The screening must take place within 24 hours of the request for an evaluation. Emergency services also include referral to outside providers, when necessary. Families Together Families Together is a statewide non-profit organization that serves families who have a child with a disability. Families together provides information about available services, activities for family members of children and youth with disabilities, individual assistance to parents regarding their child s IEP or IFSP, and connects parents with other parents who have similar circumstances. Wichita Administrative Center 3340 W. Douglas, Suite 102 Wichita, KS (In Kansas) (Voice & TTY) (Fax) [email protected] Kansas City Center 6811 W. 63rd, Suite 117 Overland Park, KS (In Kansas) (Fax) [email protected] Web Site: Garden City Center 111 Grant Avenue Garden City, KS (In Kansas) (Fax) [email protected] 26

32 Topeka Center 502 Jackson, Suite 400 Topeka, KS (In Kansas) Family Preservation Family preservation provides intensive in-home services to families who are in danger of having a child removed from their home unless the family can make the changes necessary to provide adequate care and safety. SRS contracts with DCCCA to provide family preservation services, but services are initiated through SRS. Contact your area SRS office for more information about family preservation. Family Services Family Services are services offered to families to keep a child safely in their home or a relative's home after SRS has determined a child is being abused, neglected, or will likely need to be removed from the home if services are not provided. These services for children and families may include help accessing mental health and mental retardation/developmental disability services, help accessing special medical equipment, help accessing special education services, or referrals to other SRS services, such as food stamps, child care, cash assistance, child support services, and Medicaid. They also may include services such as parenting classes, anger management classes, drug and alcohol assessments, home visitation, lice eradication, mediation, or domestic violence services. Family services are provided by SRS or purchased by SRS. The amount and type of services provided will vary from one area office to another. Contact your area SRS office for more information about family services. 27

33 Family Support Family Support services are intended to increase a family s ability to care for their child, improve the quality of the family s life, and prevent a son or daughter with a disability from having to live outside his or her home. The term family support is a broad term that is used differently from state to state, within states, and even from program to program. In Kansas, State Family Support goes to individuals with developmental disabilities and to families with children with developmental disabilities. State Family Support is intended to help with expenses related to the disability. Funding depends on eligibility, need, and demographics. An assessment is done to determine eligibility. If the disability is mental retardation, the individual s IQ score must be below 70 and the individual must have two substantial functional disabilities. If the individual does not have mental retardation, three substantial functional disabilities are required. Family support funds are available through the CDDOs and through the HCBS-MRDD Waiver. Federation of Families for Children s Mental Health The Federation of Families for Children s Mental Health is a national parent-run organization focused on the needs of children and youth with emotional, behavioral or mental disorders and their families. Federation of Families for Children's Mental Health 1101 King Street, Suite 420 Alexandria, Virginia (Fax) [email protected] Keys for Networking is the Kansas Chapter of the Federation. 28

34 Food Assistance Foster Care The Food Assistance Program is a program that provides a Vision card (plastic debit card) to eligible persons to buy food from local grocery stores. The food assistance program is available to individuals and families with incomes below 130% of the national poverty level. Your local SRS office can tell you if you qualify. Foster care is a placement outside of a child s home. Generally, it is a temporary living situation for children who have been removed from their homes because of concerns regarding abuse or neglect. Children should not enter the custody of SRS and be placed in foster care for any other reason than for abuse, neglect or exploitation. Foster care is provided by agencies that are under contract with SRS. Functional Behavioral Assessment A functional behavioral assessment (also called functional behavioral analysis or functional analysis of behavior) is an assessment in which the causes of an individual s behaviors and interventions to address the problem behaviors are identified. Instead of focusing solely on the behaviors, an individual s health, social, emotional, and environmental factors are examined in order to determine what will increase desired behaviors and decrease unwanted behaviors. A functional behavioral assessment may be part of your child s special education evaluation and/or services. If your child is in special education and is suspended for more than 10 days in a school year, the school should (a) conduct a functional behavioral assessment, or (b) review any existing behavior intervention plans that are in place and make necessary modifications. 29

35 General Assistance General Assistance is a cash assistance program for adults who are unable to support themselves because of a serious mental or physical disability. Individuals who receive General Assistance must apply for Supplemental Security Income (SSI). General Assistance is not available for those who are eligible for TAF or SSI. General Assistance is a temporary program to help an individual while he or she is pursuing disability benefits. There is a 24 month lifetime limit for receiving General Assistance, beginning with benefits received on or after July 1, One must contact SRS to apply for General Assistance. HealthWave HealthWave is a medical insurance program for children from birth to 19 who are part of families with limited incomes. The insurance is provided for little or no cost. HealthWave covers regular checkups, shots, office visits, dental care, prescriptions, hospital care, prenatal care and delivery, vision and hearing, and mental health and substance abuse services. To see if your child qualifies, call for an application. HCBS-MRDD Waiver HCBS stands for Home and Community Based Services. The HCBS-MRDD waiver provides these services for individuals age 5 and over who have mental retardation or a developmental disability or who are eligible for care in an intermediate care facility for people with mental retardation. Services include residential services, day services, medical alert, wellness monitoring, family/individual supports, and environmental/adaptive equipment. The HCBS-MRDD waiver is accessed through the CDDO. 30

36 HCBS-SED Waiver HCBS stands for Home and Community Based Services. The HCBS-SED Waiver is a resource within the Community Mental Health Center. The HCBS-SED waiver is designed to prevent the psychiatric hospitalization of children experiencing serious emotional disturbance. The overall goal of the waiver is to provide in-home and community based supportive services that allow children and youth to live with their families, remain in their communities, and prevent hospitalization. The SED Waiver is accessed through the CMHC. Children and youth must meet two types of eligibility: Clinical and Financial. The clinical eligibility is determined by the local CMHC, using standardized assessment tools. The financial eligibility is determined by the SRS Division of Economic and Employment Services (EES). Financial eligibility is based on the child s income. Children and youth on the SED waiver receive a medical card that provides access to any Medicaid funded service that is medically necessary, including both mental health and physical health services. In addition, the waiver provides 4 additional mental health services: Wraparound Facilitation, Parent Support and Training, Respite Care, and Independent Living. If an individual has a dual diagnosis (mental retardation or a developmental disability PLUS a mental health diagnosis) the first step is to find out if the individual is eligible for the HCBS- MRDD waiver by contacting the CDDO. IEP Individual Education Plan An IEP is an Individual Education Plan. Children in special education have IEPs that are decided upon by their parent or guardian, their child s teacher, and other school staff who are part of the IEP team. The purpose of the IEP is to develop a plan based on the child s individual needs that will allow the child to benefit from public education. To find out if your child is eligible for special education services, contact your child s principal and ask for a special education evaluation. (It is best to do this in writing.) 31

37 IFSP Individual Family Service Plan An IFSP is an Individual Family Service Plan. It is similar to an IEP. It is used in early intervention services (birth through 5 years) to guide the intervention process for children with disabilities and their families. Like the IEP, family members and service providers work together to develop a plan, put the plan into place, and evaluate how the plan is going. To find out if your infant or toddler qualifies, start by contacting the Interagency Coordinating Council (ICC) at (800) If your child is 3-5 years old, you may either contact the ICC or your local school district and tell them you would like an evaluation for early intervention services. Independent Living Services Job Coach If a child has been in foster care, he or she might be eligible for the Youth Independent Living program. It is for youth who are moving out of foster care as an adult. The program offers an individualized transitional living program with an adult mentor who helps the youth as they take on adult responsibilities. If your child is in foster care, you may check with your child s case manager about independent living services. A Job Coach works with an individual with a disability on his or her job site. The job coach may help a new employee learn the required tasks, or may help an employee who is having difficulty with daily job tasks or functions. Individuals who qualify for Vocational Rehabilitation services might qualify for assistance from a job coach as part of their services. To find out if your child qualifies for vocational rehabilitation services, contact your local SRS office. 32

38 Kansas Commission on Disability Concerns The Kansas Commission on Disability Concerns provides information and referral to individuals with disabilities and their families. They provide technical assistance on civil rights and legislative issues. Keys for Networking Kansas Commission on Disability Concerns 1430 SW Topeka Boulevard Topeka, KS (Toll-free TTY) (TTY) (Fax) Keys for Networking is a state-wide Consumer Advocacy Organization that provides information, support, and training to families who have children with mental health, educational, and behavioral problems. They also promote family input and involvement on decisionmaking committees and forums which develop and monitor policies and service delivery for children with serious emotional problems. Keys for Networking, Inc. / Kansas FFCMH 1301 South Topeka Topeka, KS (Fax) (In Kansas) [email protected] 33

39 Medicaid Medicaid provides healthcare coverage to individuals, children, and families with low incomes. To find out if you qualify, contact your local SRS office. Medication Management Individuals who require medication as part of their treatment may receive outpatient medication management through the Community Mental Health Center. Individuals must receive a referral for these services from their primary physician or treatment provider and must qualify for services from the Community Mental Health Center. National Alliance for the Mentally Ill The National Alliance for the Mentally Ill (NAMI) is a self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses. NAMI also offers a free 12 week course for family caregivers of individuals with severe brain disorders (mental illnesses). The course is taught by trained family members. NAMI Kansas 112 SW 6 th, Suite 505 PO Box 675 Topeka, KS (Fax) - [email protected] 34

40 Parent Support Services The Community Mental Health Centers have Parent Support and Education Specialists who help parents and caretakers better understand SED. They also explain how to best access resources in the CMHC and in the community. The Parent Support Specialists can also provide assistance and advocacy with other agencies such as the school, SRS, the Juvenile Justice Authority (JJA), hospitals, and others. Positive Behavioral Support Positive behavioral support (PBS) is a general term that refers to the use of positive behavioral interventions to achieve behavior changes. PBS often uses changes in an individual s environment to reduce the probability of problem behavior and support for the individual in learning and generalizing desired behaviors. PBS is recommended for students in special education who have challenging behaviors. Psychosocial Group A Psychosocial Group is a group made up of several children or adolescents along with mental health staff. The staff members guide activities to build and improve social skills, teach problem solving skills, and identify personal strengths, interests, and abilities. These groups are available at most Community Mental Health Centers. 35

41 Respite Care Respite care is a service that provides a temporary break for primary caregivers (families, foster families, or other unpaid caregivers) from the ongoing responsibility of caring for an individual with a disability, a chronic or terminal illness, or special health or mental health care needs, or who may be at risk of abuse or neglect. Respite care may be available through the HCBS waivers. Respite care may also be available to foster care providers. SACK SACK is the Self Advocate Coalition of Kansas. It is the statewide self-advocate group. SACK is made up of over 20 local self-advocate groups from all over the state. A selfadvocate group is an organization for adults with developmental disabilities. It provides leadership experience, community involvement opportunities, and support for the inclusion of people with developmental disabilities in the community. The Self Advocate Coalition of Kansas 2518 Ridge Ct #238 Lawrence, KS (Fax) School-Based Services Community Mental Health Centers (CMHCs) and schools can join together to provide intensive services to children with SED. Services can include Therapeutic Learning Classrooms, psychosocial groups, and school-based treatment and assessment. School-based mental health services are coordinated by agreement with the mental health center, the school, and the family. These services may be available to children receiving services through the CMHCs. 36

42 Screening The Community Mental Health Centers use the term screening to mean the process of determining whether a person can be evaluated and/or treated in the community, or if they should be referred to a state psychiatric hospital for treatment and/or evaluation. Contact your local mental health center if you would like your child to be screened for services. Self determination A limited number of individuals receive services through The Kansas Self-Determination Project. Its purpose is to allow individuals to access the funds that would be expended on them if they were in an institutional setting and to use these funds to choose supports that meet the preferred lifestyle of the person with the developmental disability. It is being conducted in Sedgwick and Shawnee counties, with services provided in the cities of Wichita and Topeka through COMCARE of Sedgwick County and the Topeka Association for Retarded Citizens, Inc. COMCARE 635 N. Main Wichita, KS (TTY) (Fax) Topeka Association for Retarded Citizens 2701 SW Randolph Ave. Topeka, KS (Fax) 37

43 Sheltered Workshops A sheltered workshop operates like a light assembly shop. The employees of sheltered workshops are adults who have physical or mental disabilities that prevent them from competing for other employment. Employees are paid on a per-piece basis. Most people who work for sheltered workshops earn less than minimum wage. Typical jobs at sheltered workshops include sorting, labeling, collating, folding, mailing, hand packaging, painting, etc. Special Education Children with disabilities are entitled to a free, appropriate public education from which they can benefit. Children receiving special education services receive an individual education plan (IEP) and are to be educated in the least restrictive environment. Special education services may include education in the general classroom and/or in a resource room and related services such as transportation, school social work services, speech and language services, occupational therapy, and adaptive physical education. The services received depend on the individual child s needs. To find out if your child is eligible for special education services, contact your child s principal and ask for a special education evaluation. (It is best to do this in writing.) 38

44 SRS -- Department of Social and Rehabilitation Services SRS stands for the Department of Social and Rehabilitation Services. SRS offers a variety of services (either directly or by contracting with others) including, but not limited to, vocational rehabilitation, family services, family preservation, foster care, and adoption, adult protective services, food assistance, general assistance, Medicaid, and temporary assistance to families. There are 11 Area Offices. Contact your Area Office to locate your local office. Chanute Area Office 1500 W. 7th. Chanute, KS Counties served: Allen, Anderson, Bourbon, Cherokee, Crawford, Labette, Linn, Montgomery, Neosho, Wilson, Woodson Emporia Area Office 1701 Wheeler Emporia, KS Counties served: Butler, Chase, Chautauqua, Coffey, Cowley, Elk, Greenwood, Lyon, Marion, Morris, Osage Garden City Area Office 1710 Palace Drive Garden City, KS Counties served: Barber, Clark, Comanche, Edwards, Finney, Ford, Grant, Gray, Greeley, Hamilton, Haskell, Hodgeman, Kearney, Kiowa, Lane, Meade, Morton, Ness, Pratt, Scott, Seward, Stafford, Stanton, Stevens, Wichita 39

45 Hays Area Office 1105 E. 30 th PO Box 549 Hays, KS Counties served: Barton, Cheyenne, Decatur, Ellis, Gove, Graham, Logan, Norton, Osborne, Pawnee, Phillips, Rawlins, Rooks, Rush, Russell, Sheridan, Sherman, Smith, Thomas, Trego, Wallace Hutchinson Area Office 501 North Monroe Hutchinson, KS Counties served: Harper, Harvey, Kingman, McPherson, Reno, Rice, Sumner Kansas City Area Office 400 State Ave. Kansas City, KS County served: Wyandotte Lawrence Area Office PO Box 590, 1901 Delaware Lawrence, KS Counties served: Atchison, Brown, Doniphan, Douglas, Franklin, Jackson, Jefferson Manhattan Area Office 2709 Amherst St. Manhattan, KS Counties served: Clay, Cloud, Dickinson, Ellsworth, Geary, Jewell, Lincoln, Marshall, Mitchell, Nemaha, Ottawa, Pottawatomie, Republic, Riley, Saline, Wabaunsee, Washington 40

46 Olathe Area Office 8915 Lenexa Dr. Overland Park, KS Counties served: Johnson, Leavenworth, Miami Topeka Area Office 500 SW VanBuren Topeka, KS County served: Shawnee Wichita Area Office 230 E. William Wichita, KS County served: Sedgwick Temporary Assistance to Families (TAF) Temporary Assistance for Families (TAF) provides temporary cash assistance and medical assistance to families. Adult family members must participate in work activities and seek employment to qualify for this program. The family must contain at least one child under the age of 18. There is a 5 year life time limit for receiving TAF beginning with benefits received on or after October 1, Check with your local SRS office to see if you qualify. 41

47 Therapy Therapy is available in many areas and for many issues. Generally, it focuses on an individual s or a family s mental health, the relationships between family members or other individuals, or individual s behavioral challenges. There are several types of therapy including, but not limited to, behavior therapy, individual therapy, group therapy, and family therapy. Individual -- Individual therapy involves one client or consumer meeting with a therapist to explore issues. Family Therapy -- Family Therapy is a type of therapy that involves members of a family. Family members may not all be present, but the therapist views the individuals as members of a family and explores issues within the context of the family. Home based family therapy -- Home Based Family Therapy takes place in a family s home so the family can work on issues such as parenting, conflict resolution, or communication in the family s natural environment. Community Mental Health Center home based services focus on the entire family and family strengths. The goal of home based services is to prevent hospitalization or out-of-home placement and create an ongoing community support system. Behavior Therapy -- Behavior Therapy focuses on eliminating an unwanted behavior or enhancing a desired behavior instead of focusing on the underlying causes of a problem. It is based on a belief that behaviors are learned and can be unlearned. Group Therapy -- Group therapy involves several clients or consumers meeting together with a therapist to explore similar issues. 42

48 Transition Planning Schools offer transition planning as part of special education services. Transition planning consists of curriculum, services, and supports for students with disabilities with a goal of helping students move successfully from school to adult life. If your child receives special education services, transition planning should be part of your child s IEP beginning when he or she is years of age. Contact a member of your child s IEP team if you want to discuss transition planning for your child. Vocational Rehabilitation Vocational Rehabilitation services are available for people with disabilities to help them think about their skills and interests, to develop individual plans for employment, and to buy or arrange for services they need in order to become employed. Services may include counseling and guidance, training, job placement, physical and mental restoration, or rehabilitation technology. Services are delivered through SRS. Vocational Services (other than Vocational Rehabilitation) Some Community Mental Health Centers provide pre-vocational services, job development, on site job coaching, and assistance in pursuing educational goals. Contact your local Community Mental Health Center to see if they provide vocational services. 43

49 Wraparound Wraparound is not one program or type of service, but a process that is used to help children and families address their needs. Wraparound is used to help individuals and their families imagine the best outcomes for the focus person and to help them to achieve those outcomes. In Kansas, wraparound services are available to those who are served by the HCBS-SED waiver. Individualized service plans that are based on the unique strengths, values, and preferences of the child, family, and community are developed with the help of mental health staff by the child, parents and/or caretakers, and others who are influential in the child s life. These plans combine intensive mental health care with the services of schools (both general and special education), court services, the Juvenile Justice Authority, hospitals, the Child Welfare System (Foster Care, Adoption, and Family Preservation), and other forms of informal and formal local community supports. This process emphasizes building collaboration and coordination among family, caretakers, service providers, educators, and community resources. 44

50 Part 3 Glossary of Terms Crisis Various agencies use different definitions of crisis. The CDDO defines a person in crisis as one who: 1. Is in significant risk of serious harm because the primary caregiver(s) is/are not able to provide the level of support necessary to meet the person s basic needs; or 2. Requires protection from confirmed abuse, neglect, or exploitation; or 3. Is at significant, imminent risk of causing serious harm to others in their current situation. The Community Mental Health Centers use three categories to determine how quickly a person needs services: emergent, urgent, and routine. They use the following definitions for emergent situations and urgent situations: Emergent situations are situations in which services are needed immediately to meet the needs of someone who is experiencing an acute psychiatric crisis. Urgent situations are situations in which services are required to prevent a serious complication or deterioration in a person s health and cannot be delayed without imposing undue risk on their well being and if not promptly treated, could become an emergency situation. Custody (or State Custody) For a child not involved in the juvenile justice system, being in the custody of the state means the child has been removed from the home and determined to be a Child in Need of Care (CINC) because he or she is at imminent risk of abuse, neglect, or exploitation. 45

51 DSM DSM stands for the Diagnostic and Statistical Manual of Mental Disorders. It is a comprehensive classification of all recognized psychiatric disorders. Mental health professionals use it to help diagnose consumers with mental health disorders. Emergent Situation This is a term used by the Community Mental Health Centers. Emergent situations are situations in which services are needed immediately to meet the needs of someone who is experiencing an acute psychiatric crisis. Family Fee SRS may collect fees from parents for services provided to their children under 18 years of age who are on a Home and Community Based Service (HCBS) Waiver. The fees are fixed based on a sliding scale. Fees are not charged for persons at or below 200% of poverty level. Fees can be adjusted and/or waived due to hardship situations. A child can not be removed from the HCBS waiver if the parent(s) fail to pay the fee. Parents are asked to provide information regarding family size and income (Family Fee Information Disclosure Form) which is used to determine the amount of the monthly fee. Functional Impairment The Community Mental Health Centers define Functional impairment as difficulties (internalizing and externalizing) that substantially interfere with or limit a youth from achieving or maintaining one or more developmentallyappropriate social, behavioral, cognitive, communicative, or adaptive skills. Functional impairments that come and go as well as those that are continuous are included. Youth who would have met these criteria if they were not receiving treatment or other support services are included. 46

52 IQ Score IQ stands for Intelligence Quotient. It is a measure of an individual s level of intelligence, and it is sometimes used to determine if an individual qualifies for services. Mental Retardation Mental Retardation means substantial limitations in present functioning that begin during the period from birth to age 18 years and is characterized by significantly below average intellectual functioning. It exists along with deficits in adaptive behavior including related limitations in two or more of the following skill areas: 1. Communication 2. Self-care 3. Home living 4. Social skills 5. Community use 6. Self direction 7. Health and safety 8. Functional academics 9. Leisure 10. Work If an individual has an IQ score of 70 or above, the individual does not meet the criteria for mental retardation when assessed by the CDDOs. However, he or she may still meet the criteria for developmental disability. SED SED stands for Serious Emotional Disturbance. (Some agencies use SED to mean Severe Emotional Disturbance or Severely Emotionally Disturbed). The Community Mental Health Centers use this term to refer to a diagnosed mental health problem that substantially disrupts a child s ability to function socially, academically, and/or emotionally. 47

53 In Kansas, a child or adolescent with Serious Emotional Disturbance (SED) means one who: Is under the age of 18, or is under the age of 22 and has been receiving community based mental health services prior to the age of 18 that must be continued for optimal benefit; and Currently has a diagnosable mental, behavioral, or emotional disorder of sufficient duration to meet the diagnostic criteria listed in the most current DSM; Disorders include those listed in the most current DSM with the exception of DSM IV V codes, substance abuse or dependence, and developmental disorders, unless they co-occur with another diagnosable disorder that is accepted within this definition; and Has a functional impairment, which substantially interferes with or limits the youth s role or functioning in family, school, or community activities. SPMI SPMI stands for Severe and Persistent Mental Illness. This is a term used by the Community Mental Health Centers (CMHC). They have a process to determine if individuals over the age of 18 meet their criteria for SPMI. Contact your CMHC for more information about the SPMI criteria. Urgent Situation This is a term used by the Community Mental Health Centers. Urgent situations are situations in which services are required to prevent a serious complication or deterioration in a person s health and cannot be delayed without imposing undue risk on their well-being and if not promptly treated, could become an emergency situation. 48

54 Part 4 Family Quality of Life Survey and Worksheet Developed by the Beach Center on Disability, at the University of Kansas, in partnership with families, service providers and researchers 49

55 50

56 Step 1: Family members complete the survey. This survey was developed to help you learn how you feel about your family quality of life and help you identify priorities for supports and services. It is a good idea to have as many family members as possible fill out the survey. That way more family members voices will be heard. Here are some frequently asked questions regarding the survey. What do you mean by my family having a good life together? We believe families have a good life when: the family s needs are met, family members enjoy their life together as a family, and family members have the chance to do things that are important to them. Who do you mean when you say family? Your family may include many people mother, father, partners, children, aunts, uncles, grandparents, etc. For this survey, please include the people who think of themselves as part of your family (they may or may not be related by blood or marriage), and who support and care for each other on a regular basis. For this survey, please DO NOT think about relatives (extended family) who are only involved with your family every once in a while. How do you want me to answer the questions? Since the lives of families change over time, please think about what happened in your family over the past six months as you fill out this survey. There are two parts in this survey: Importance and Satisfaction. Importance: As you read the statement on the left side of the page, shade in the circle to show how important you think it is. If you shade the first circle, that means you think the statement is only a little important. If you shade the fifth circle, that means you think that statement is critically important. Satisfaction: Now, shade in the circle to show how satisfied you are. If you shade the first circle, that means you are very dissatisfied. If you shade the last circle, that means you are very satisfied. 51

57 Here is an example: For my family to have a good life together, How satisfied am I that. how important is it that A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied My family lives in a clean home. On the importance question, Mary shaded the fourth circle under importance because she thinks that having a clean home is very important, but not critically important. On the satisfaction question, she shaded the second circle because her family doesn't have the time or the help to keep the house as clean as she would like, and this bothers her somewhat. Now it s your turn. The survey is broken into 5 sections: Family Interaction Parenting Health and Safety Family Resources Support for Persons With Disabilities You may decide to go through all of them, or you may decide just to focus on one or two that you know are most important to you. 52

58 Family Quality of Life Survey For my family to have a good life together, How satisfied am I that. how important is it that Family Interaction A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied 1. My family enjoys spending time together. 2. My family is able to handle life s ups and downs. 3. My family has hope for the future. 4. My family members support each other to accomplish goals. 5. My family members talk openly with each other. 6. My family solves problems together. 7. My family members show that they love and care for each other. 8. My family members have good relationships with extended family members (grandparents, in-laws, etc.). 53

59 For my family to have a good life together, how important is it that How satisfied am I that. Parenting A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied 9. Family members help the children with schoolwork and activities. 10. Adults in my family know other people in the children s lives (friends, teachers, etc.) 11. Family members teach the children how to get along with others. 12. Adults in my family have the information needed to make decisions about the children. 13. Adults in my family teach the children to make good decisions. 14. Adults in my family have time to take care of the individual needs of every child. 15. Family members help the children learn to be independent. 54

60 For my family to have a good life together, How satisfied am I that. how important is it that Health and Safety A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied 16. My family gets medical care when needed. 17. My family gets dental care when needed. 18. My family members take care of each other when one of us is sick. 19. My family has health care providers who understand our individual health needs. 20. My family feels safe at home, work, school, and in our neighborhood. 21. My family gets regular medical check-ups. 55

61 For my family to have a good life together, How satisfied am I that. how important is it that Family Resources A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied 22. My family members have a way to get to the places they need to be. 23. My family has outside help available to us to take care of special needs of all family members. 24. My family has the support we need to relieve stress. 25. My family has a way to take care of our expenses. 26. My family members have friends or others who provide support. 27. My family members have some time to pursue individual interests.

62 For my family to have a good life together, How satisfied am I that. how important is it that Support for Persons with Disabilities A little Important Important Critically Important Very Dissatisfied Neutral Very Satisfied 28. My family member with special needs has support to make progress at school or in the work place. 29. My family member with special needs has support to make progress at home. 30. My family member with special needs has support to make friends. 31. My family member with special needs has support to be included in community activities. 32. My family has support to get the government benefits that our family member with a disability needs. 33. My family has support to get services from local agencies that our family member with a disability needs. 34. My family has support to get good medical care for our family member with a disability. 35. My family has a good relationship with the service providers who work with our family member with a disability. 57

63 Step 2: Family members complete worksheet The survey you completed can help you and service providers figure out where to begin. It can help you focus on what goals you would like to work on and what services or supports you would like to seek. The following worksheet will help you sort out what you said in the survey. You can use it to guide your own thinking, or you may choose to take it with you when you meet with service providers to help them understand what is important to you and your family. Here is an example: The Burnes family completed the survey. The family members who completed it were the father, the mother, and a teen-age daughter. They also completed it for their family member who has mental retardation and conduct disorder based on the way they thought he would respond if he had been able to complete the survey. They paid particular attention to the areas where one or more of them identified something as critically important and whether or not they were satisfied in those areas. Then they answered the worksheet questions. 58

64 Family Quality of Life Worksheet Sample First, look back through the survey you just completed. Take particular note of the areas that you consider critically important. Are you satisfied or dissatisfied with those areas? 1. In the space below, write down which areas you consider critically important, and you are satisfied with the way things are going in those areas: All of us believed that these two items were critically important: 19. My family gets medical care when needed. 40. My family has support to get good medical care for our family member with a disability. Mom also believed that this item was critically important. 7. My family members show that they love and care for each other. We re satisfied with how things are going in these areas. Now consider whether you would like support in order to keep up the satisfaction in these areas.! Yes, my family and I would like, or need, support in order to keep things going in these areas. What type of support do you and your family want or need? We would like support to keep this item going: 40. My family has support to get good medical care for our family member with a disability. Right now, John has good medical care, but soon he won t be eligible to stay on our insurance policy because of his age. We need help figuring out what to do about medical care for him after he s off the family policy. 59

65 ! No, we don t want or need any support in this area. We feel ok about the other areas listed above and don t want additional support for them. 2. Next, write down which areas you consider critically important, but you were very dissatisfied with the way things are going. We all noted these areas as critically important and were dissatisfied with them: 24. My family feels safe at home, work, school, and in our neighborhood. We don t feel safe sometimes with John because of his behavior when he is angry. 29. My family has outside help available to us to take care of special needs of all family members. Sometimes we really need someone to stay with John while we are unable to & we don t have anyone who is willing or able to do that. We believe that this is critically important to John and that he is dissatisfied in this area: 32. My family members have friends or others who provide support. John doesn t really have any friends and we think he would really like someone outside of the family to socialize with. 60

66 Now consider whether you would like support in order to increase your satisfaction in these areas.! Yes, my family and I would like, or need, support in order to keep things going in these areas. What type of support do you and your family want or need? We would like support in each of these areas. We think respite care might help. We would also like help with John s behavior & we d like to find some kind of safe social outlet for John. We d like some suggestions from the mental health center and the CDDO.! No, we don t want or need any support in this area. 3. Finally, think about the areas that fell in between these extremes and write down any areas that you feel need attention. All of us felt that this area is very important, and we are doing ok with it right now, but we think it could be a lot better. We sure don t want it to get worse! #8. My family members have good relationships with extended family members (grandparents, in-laws, etc.). Now consider whether you would like support in order to increase your satisfaction in these areas.! Yes, my family and I would like, or need, support in these areas. What type of support do you and your family want or need? We wonder if this is something the mental health center could help with or maybe some community organization has some kind of information to help with this. We think it would help if our extended family understood John s disability better.! No, we don t want or need any support in these areas. Now it is your turn. A blank worksheet is on the following pages. 61

67 Family Quality of Life Worksheet First, look back through the survey you just completed. Take particular note of the areas that you consider critically important. Are you satisfied or dissatisfied with those areas? 1. In the space below, write down which areas you consider critically important, and you are satisfied with the way things are going in those areas: Now consider whether you would like support in order to keep up the satisfaction in these areas.! Yes, my family and I would like, or need, support in order to keep things going in these areas. What type of support do you and your family want or need?! No, we don t want or need any support in this area. 62

68 2. Next, write down which areas you consider critically important, but you were very dissatisfied with the way things are going. Now consider whether you would like support in order to increase your satisfaction in these areas.! Yes, my family and I would like, or need, support in order to keep things going in these areas. What type of support do you and your family want or need?! No, we don t want or need any support in this area. 63

69 3. Finally, think about the areas that fell in between these extremes and write down any areas that you feel need attention. Now consider whether you would like support in order to increase your satisfaction in these areas.! Yes, my family and I would like, or need, support in these areas. What type of support do you and your family want or need?! No, we don t want or need any support in these areas. 64