Accessing Resources: A Parent’s Perspective 2018 Texas Parent to Parent Conference Elaine Hime, Senior Community Outreach Specialist Texas Children’s Health Plan

Abby, Rutherford and Jackson

Rutherford at Age 23

Goal: At the Conclusion of the Session, the Participants will be to Navigate the State of Texas Agencies Programs that Serve Children with Disabilities Objectives: Become familiar with programs provided by Texas Health and Human Services Commission that serve families of children with disabilities/chronic illness; Understand how your child’s diagnosis assist in obtaining services.

Goal: The Participants will be to Navigate the State of Texas Agencies Programs that Serve Children with Disabilities Objectives cont: Understand why families face challenges when applying for state services in Texas.

2016 Average Cost Per Person with Disability in Texas Living in State School, ICF-IDD or HBCS *UCP: A Case for Inclusion http://cfi.ucp.org/state-scorecards/

How can I ask for the program if I don’t know the program exist? Paradox for Parents How can I ask for the program if I don’t know the program exist?

State Programs

Qualifying for State Healthcare Benefits for a Child with Disabilities or Special Health Care Needs Children’s Medicaid and Long Term Services and Supports (LTSS): Temporary Aid for Needy Families – STAR Program; Foster Care with Dept. of Family and Protective Services – STAR Health; SSA Social Security Income (Feds) – STAR Kids Program; Medicaid Buy-In For Children with Disabilities - STAR Kids Program; Texas Waiver Programs (Interest List) Non-Medicaid CHIP (no Long Term Services and Supports); Children with Special Health Care Needs (CSHCN) (Waiting List)

Medicaid Buy-In Programs Medicaid Buy-In programs - higher income requirement to help children and adults with disabilities or special health-care needs obtain Medicaid health-care coverage and benefits: Medicaid Buy-In for Children- allows families who have a child with a disability, but earn too much money to get regular Medicaid; Medicaid Buy-In for Adults- allows adults age 19 and older who have disabilities or special health-care needs and earn a certain amount of income through a job to buy Medicaid coverage. To apply, call 211.

Medicaid Buy-In for Children with Disabilities (MBIC) – STAR Kids Disability or special health-care need that meets the same rules used to qualify for Supplemental Security Income (SSI). This means that your child’s disability or special health-care need must significantly restrict their daily activities; Be age 18 or younger; Not be married; Live in Texas and be a U.S. citizen or legal resident; Have a family income that meets certain requirements but no assets test: Cost share; Yearly limit for families to pay.

Health Insurance Premium Payment Program (HIPP) Helps Families Pay for Health Insurance Premium Payment Program (HIPP) Helps Families Pay for *Employer-Sponsored Health Insurance Premiums You may qualify for HIPP if it costs Medicaid less to cover you or your family under employer-sponsored health insurance than it costs to cover family members who have Medicaid. Apply if: anyone in your family has Medicaid; someone in your family has health insurance at work; Employer-sponsored health insurance is a group health plan you can get through your job. The family member who gets Medicaid must be able to get coverage on this plan. Call 211 or 1-800-440-0493

Attendant Care Programs Delivered by STAR Kids or IDD Waiver - Long Term Services and Supports (LTSS) Definitions: Activities of Daily Living (ADLs) - Basic personal everyday activities including, but not limited to, tasks such as eating, toileting, grooming, dressing, bathing and transferring. Independent Activities of Daily Living (IADLS) - Activities related to living independently in the community, including meal planning and preparation; managing finances; shopping for food, clothing and other essential items; performing essential household chores; communicating by phone or other media; traveling around and participating in the community. Health Maintenance Activities (HMA) - HMA’s are health maintenance activities that may be exempt from delegation based on RN assessment, that enable the client to remain in an independent living environment and go beyond ADL’s because of the higher skill level required to perform. Definitions from the HCS Program Billing Guidelines, HCSBG, Section 2000

Attendant Care Programs STAR Kids Personal Care Services (PCS) Community First Choice (CFC) Medically Dependent Children’s Program (MDCP); Youth Empowerment Services (YES). Intellectual Developmental Disabilities (IDD) Waivers (Home and Community-Based Services, HCBS or 1915 C Waivers): Community Living Assistance and Support Services (CLASS); Home and Community-Based Services (HCS); Texas Home Living (TxHmL); Deaf Blind and Multiple Disabilities (DBMD) STAR – state, call 211

Choose How Your Want Your Attendant Services Delivered Agency Option – provider Consumer Directed Services - a member or legally authorized representative (LAR) becomes the CDS employer of record for certain services and involves a Financial Management Service Agency (FMSA) Service Responsibility Option: Member manages most day to day activities, supervision of the attendant, and how the services are provided. The member’s STAR Kids Managed Care Organization and Provider Agency (as the employer) manage the business details.

Personal Care Services (PCS) “Extra Pair of Hands” PCS is medically necessary when an individual has a: physical, cognitive, or behavioral, and under the age of 21 Has a limitation related to the individual’s disability or chronic health condition that inhibits the individual’s ability to accomplish: ADLS IADLs, and HMAs and nurse delegated task within the scope of PCS Contact the STAR Kids Service Coordinator or IDD Service Coordinator. If on STAR, contact 211.

Personal Care Services (PCS) PCS helps clients with everyday task, it includes: Assistance with ADLs and IADLs Nurse-delegated tasks and HMAs within the scope of PCS, as permitted by program policy and 22 Texas Administrative Code Chapter 225 (relating to RN Delegation to Unlicensed Personnel and Tasks not Requiring Delegation in Independent Living Environments for Clients with Stable and Predictable Conditions); and Hands-on assistance, cueing, redirecting, or intervening to accomplish the approved PCS task.

Community First Choice (CFC) Services delivered by STAR Kids or IDD Waiver Personal Assistance Services (PAS) provides: Non-skilled assistance with the performance of ADLs and IADLs; Household chores necessary to maintain the home in a clean, sanitary and safe environment; Escort services, which consist of accompanying, but not transporting, and assisting a member to access services or activities in the community; and Assistance with health-related tasks. Health-related tasks, in accordance with state law, include tasks delegated by a registered nurse, health maintenance activities and extension of therapy

Community First Choice (cont.) Personal assistance services, habilitation, emergency response services and support management. An individual must: Be eligible for Medicaid; Need an institutional level of care including: hospital or nursing facility (medically involved or MDCP) or receiving YES – STAR Kids intermediate care facility for individuals with an intellectual or developmental disability (IDD)– LIDDA (qualifier) and STAR Kids (SAI for needs and access hours); institution providing psychiatric services for individuals under age 21 – LMHA (qualifier) and STAR Kids (SAI for needs and access hours).

Community First Choice (cont.) Habilitation (HAB) that assists members with acquisition, maintenance, and enhancement of skills necessary for the member to accomplish: ADLS; IADLs; health-related tasks. Provided to allow a member to reside successfully in a community setting by assisting the member to acquire, retain and improve self-help, socialization, and daily living skills or assisting with and training the member on ADLs and IADLs.

Community First Choice (cont.) Community First Choice Emergency Response Service (ERS) is designed to assist individuals who do not require supervision during the day or are alone for large parts of the day, and are cognitively able to recognize an emergency. This service connects a member to an ERS provider who notifies local authorities, like paramedics or a fire department, to a member's emergency. This service is not routinely authorized for members who are minors. Community First Choice (CFC) support management provides voluntary training on how to select, manage and dismiss attendants. Support management is available to any member receiving CFC services, regardless of the selected service delivery model.

Intellectual and Developmental Disability Services/Local Intellectual Developmental Disability Authority (LIDDA) Texas Council for Community Centers – locate your LIDDA for your area http://txcouncil.com/ Services depends on the LIDDA, different LIDDAs have different services depending on the needs of their community. All LIDDAS offer: Home and Community Based Services (HCS) – Medicaid Waiver with long Interest List; Texas Home Living Waiver (TxHmL) – family has to be Medicaid eligible, “half Waiver”.

Texas State Waiver Programs

What is a Waiver? A “waiver” is an exception to the usual Medicaid requirements, granted to a state by Center for Medicaid Services (CMS). Medicaid Waivers allow people with disabilities to receive services they need in their homes or other community settings instead of a nursing home or institution; For families of children with disabilities – this means that the family’s income is “waived” and only the child’s income is counted to qualify for Medicaid (Children with disabilities at age 18 can qualify for SSI based on the child’s income).

Texas Waiver Programs Medically Dependent Children’s Program (MDCP)– acute care and Long Term Support Services (LTSS) are coordinated and delivered through the STAR Kids Program; Youth Empowerment Services (YES)– acute care and LTSS services are coordinated and delivered through the STAR Kids Program; Home and Community-Based Services, (HCBS): Community Living Assistance and Support Services (CLASS); Home and Community-Based Services (HCS); Texas Home Living (TxHmL); Deaf Blind and Multiple Disabilities (DBMD). IDD Waiver services are coordinated and delivered by the Waiver Case Manager and Waiver Service Delivery Provider.

Medically Dependent Children’s Waiver Program The Medically Dependent Children Waiver Program (MDCP) provides services to support families caring for children who are medically dependent and to encourage the transition to the community for children in nursing homes. Examples: Trachs; Vents; Seizures – depending on severity; Oxygen Dependence; Renal dialysis; G-Buttons; Documented Immune Deficiency; Total Parenteral Nutrition (TPN).

Member Eligibility for Medically Dependent Children’s (MDCP) Waiver Program Must be under 21. If under 18, the adult child must live with an adult family member (such as a parent, guardian or sibling) or with a foster family that includes no more than four children unrelated to you; Must be a U.S. citizen or a resident with approved status who lives in Texas; Must meet the medical necessity determination for nursing home care; Cannot be enrolled in another waiver program; The child must meet Medicaid eligibility guidelines.

Medically Dependent Children’s (MDCP) Waiver Program Services Respite Services – Relief for the primary caregiver to take a “break” during times that care is normally provided (not including when the primary caregiver is at work, school or job training); Flexible Family Support Services – Individualized and disability-related services that support a member to participate in the community, during times the caregiver is at work, school, and job training : FFSS services supports: child care; independent living; post-secondary education. Caregiver is at work, job training or school; promotes inclusion in the community and natural supports.

Medically Dependent Children’s (MDCP) Waiver Program Services (cont.) Minor home modifications-Physical changes made to the home environment to help people with functional disabilities or impairments become more independent. Providing safety and reducing risks for injury to themselves or their caregivers (up to a lifetime of $7,500); Adaptive aids-An adaptive aid is an item or service that enables an individual to retain or increase the ability to perform activities of daily living or to control the individual's environment (up to $4,000 annually); Employment Assistance – assistance with obtaining a job; Supported Employment – assistance with sustaining competitive employment, if needing intensive and ongoing support with work.

Placing Your Child on the MDCP Interest List Call the MDCP/CLASS Interest List Telephone Line at 1-877-438-5658: will need to provide Social Security number and the diagnosis or how the diagnosis limits the child abilities, for example, cannot walk; Letter of Placement on MDCP Interest List will be mailed to the family in about two weeks; Parent will be responsible for updating contact info. Interest List is 6 to 8 years.

Money Follows the Person (MFP) or Rider 28 for Access to MDCP This policy allows for individuals residing in a nursing home facility to relocate back into a community setting to receive community-based services. MDCP Rider 28 Process: Must stay at least part of two days in a nursing facility (Admission and discharge must be on different days); Parent must obtain a letter from child’s physician stating health risk if child stayed in nursing facility for 30 days as normally required for accessing Medicaid; Child must meet strict guidelines and meet two criteria's for MDCP, not one.

Community Living Assistance and Support Services (CLASS)Waiver Program CLASS provides home and community-based Services to people with related conditions as a cost-effective alternative to placement; A related condition is a disability, other than an intellectual disability (physical disability),that originated before age 22 and that affects a person's ability to function in daily life; LTSS are provided by the CLASS Program. STAR Kids provides the acute medical needs.

Who Can Receive Community Living Assistance and Support Services (CLASS) Waiver Program? No age limit; Must be diagnosed with a related condition (physical as primary that is not ID, ID may be secondary) that manifested before age 22; Must be eligible for Medicaid in the community (not the family if child is under 18) and not be enrolled in another Medicaid waiver program; Must need habilitation and case management services; Must live in your own or your family's home; Income and resources may not exceed specified limits, monthly income within 300% of SSI monthly income limit.

CLASS Waiver Services Adaptive aids Support Family Services Occupational therapy* Dental and dental sedation Physical therapy* Dietary Respite care* Habilitation*(attendants) Specialized therapies* Minor home modifications Speech therapy* Nursing* Supported employment* Cognitive Rehab Therapy* Transition assistance services* Employment Assistance* Supplies Prescribed Drugs Auditory enhancement training Prevocational Services Behavioral support Case management *Consumer Directed Service Option Continued family services

CLASS Waiver Program Team Direct Service Agency – The provider that is responsible for delivering the services to the CLASS recipient according to the CLASS Budget; Case Management Agency- Provides a Case Manager who works with the Direct Service Agency and the family to: ensure services are delivered; Coordinate the Annual Budget with the family and Direct Service Agency; Remember CFC and PCS are assessed and delivered through CLASS, not STAR Kids.

Interest List for CLASS Waiver Program Call the MDCP/CLASS Interest List Telephone Line at 1-877-438-5658: Parent will need to provide Social Security number; Diagnosis or how the diagnosis limits the child abilities, for example, cannot walk; Letter of Placement on CLASS Interest List will be mailed to the parent in about two weeks; Parent will be responsible for updating contact info. Interest List is 10 to 12 years.

Home and Community-Based Services (HCS) Waiver Program/LIDDA The Home and Community-based Services (HCS) Waiver Program provides individualized services and supports to people with Intellectual disabilities who are: living with their families; living in their own homes; living in other community settings such as a small group homes (where no more than four people live). Contact your local LIDDA and ask for the HCS Program Waiver Interest List. LTSS are provided by the HCS Program. STAR Kids provides the acute medical needs.

Who Can Receive Home and Community Based Services (HCS) Waiver Program? No age limit; Has an IQ of 69 or below or has an approved related condition with an IQ of 75 or below or qualify for care in an intermediate care facility for individuals with an intellectual disability or related conditions (ICF/IDD); Has mild to severe deficits in adaptive behavior; Cannot be enrolled in another waiver program; Income and resources may not exceed specified limits, monthly income within 300% of SSI monthly income limit.

Home and Community Based Services (HCS) Waiver Adaptive aids Behavioral Support Day habilitation Social Work Dental treatment Employment Assistance* Minor home mods Supported Employment Nursing* Residential assistance Respite* Supported Home Living/Transportation* Physical therapy Host Home/Companion Care Occupational therapy Supervised Living Speech therapy Residential Support Services Supported employment* Audiology *Consumer Directed Service Option with Support Consultation Transition Assistance Services - MFP Dietary Services Cognitive Rehab Therapy*

Home and Community Based Services (HCS) Waiver Team The LIDDS provides a Service Coordinator who works with the HCS Provider and the family to: Ensure services are delivered; Coordinating the Annual Budget with the family and HCS Provider; HCS Provider – responsible for delivering the services to the HCS recipient according to the HCS Budget; CFC and PCS are assessed and delivered through HCS Provider, not STAR Kids Program.

HCS Interest List is 10 to 12 years. Interest List for HCS Parent calls their LIDDA for placement on the HCS Interest List http://txcouncil.com/ The LIDDA may have a staff person appointed for placing people on the HCS Interest List; Parent may be asked diagnosis of the child; Letter of Placement on HCS Interest List will be mailed to the parent in about two weeks; Parent will be responsible for updating contact information. HCS Interest List is 10 to 12 years.

CLASS vs. HCS Rates can be higher in HCS for attendant Care in the Home: HCS offers, CLASS does not: Day Habilitation – adult day care provided by HCS provider or contracted to another HCS provider; Group Home of no more than 4 people; CLASS offers specialized therapies HCS does not.

Texas Home Living (TxHmL) Waiver Program/LIDDA The Texas Home Living (TxHmL) program provides selected essential services and supports to people with an intellectual disability or a related condition who live in their own home or their family's home: Service coordination is provided by the LIDDA; TxHmL services are limited to a yearly cost of $17,000 per person, small budget compared to HCS; TxHmL provides LTSS services and STAR Kids provides the acute care services.

Who Can Receive Texas Home Living (TxHmL) Waiver Services No age limit; Texas resident living in his or her own home or family’s home; Has an IQ of 69 or below or has an approved related condition with an IQ of 75 or below; Has mild to severe deficits in adaptive behavior; Eligible for Medicaid benefits based on the Family’s income. Is not enrolled in any other Medicaid waiver program; Person has been placed on the HCS Interest List.

TxHmL Services Adaptive aids Behavior support Caregiver respite Community support Daytime programs Dental treatment Help getting and keeping a job Nursing services Specialized therapies

Interest List for TxHmL Parent calls their LIDDA for placement on the TxHmL Interest List: The LIDDA may have a staff person appointed for placing people on the TxHmL Interest List; Parent may be asked diagnosis of the child; Letter of Placement on TxHmL Interest List will be mailed to the parent in about two weeks; Parent will be responsible for updating contact information. TxHmL Interest List is about 8 years.

Deaf Blind and Multiple Disabilities (DBMD) Waiver Program DBMD provides home and community-based services to individuals with deaf blindness and another disability. Qualifications for DMBD Waiver include: Have a related condition that was displayed before age 22; Meet the level-of-care criteria for placement in an ICF/IID; Demonstrate need for one or more service on a monthly basis; Do not exceed specified income and resource limits.

Deaf Blind and Multiple Disabilities (DBMD) Waiver Must be Medicaid eligible – Through SSI or Texas Health and Human Services Commission Individual must also exhibit substantial functional limitation in at least three area of life activities: Learning Self Direction (age 10 and over) Mobility Independence living (age 10 and over) Self-care Language

Deaf Blind and Multiple Disabilities (DBMD) Waiver - specific of the individual needs may include: Adaptive aids and medical supplies Nursing services Assisted living (licensed up to six beds) Occupational therapy Audiology Orientation and mobility Behavior support services Physical therapy Case management Residential habilitation Chore services Transportation-residential habilitation Dental services and sedation Respite* Dietary services Speech, hearing and language therapy Employment assistance* Supported employment* Intervener* Residential habilitation* Minor home modifications *Consumer Directed Service Option with Support Consultation

Interest List for DBMD The Interest List is three years. Parent calls the MDCP/CLASS/DBMD Interest List Telephone Line at 1-877-438-5658: Parent will need provide Social Security Card number; Diagnosis or how the diagnosis limits the child abilities, for example, cannot walk for the MD part of DBMD; Letter of Placement on DBMD Interest List will be mailed to the parent in about two weeks; Parent will be responsible for updating contact info. The Interest List is three years.

Youth Empowerment Services (YES) The YES Waiver provides comprehensive home and community-based mental health services to youth between the ages of 3 and 18 (up to a month before a youth's 19th birthday), who have a serious emotional disturbance. The YES Waiver not only provides to children and youth at risk of institutionalization and/or out-of-home placement due to their serious emotional disturbance: flexible supports; specialized services; but also strives to provide hope to families by offering services aimed at keeping children and youth in their homes and communities.

Youth Empowerment Services (YES) Requirements Eligible for Medicaid – the child, not the family; Be at least age 3 or younger than age19; Meet the criteria to be in a psychiatric hospital; Have diagnosed serious emotional disturbance; Currently live in a home setting with a legal guardian or on their own without a legal guardian; There may be and Interest List for YES Services, check with the Local Mental Health Authority (LMHA).

Examples of YES Waiver Diagnoses Major Depressive Disorder; Bipolar; Schizophrenia; Intermittent Explosive Disorder; Oppositional Defiant Disorder.

YES Waiver Services Respite Paraprofessional services Community living supports Supportive family-based alternatives Specialized therapies Transition services Family support Employee Assistance LTSS through STAR Kids Supported employment Day Activity and Health Services Adaptive aids and supports Private Duty Nursing Minor home mods Community First Choice Non-medical transportation

The waiting time for the Interest List depends on the LIDDA Interest List for YES Parent contacts their LMHA for placement on the YES Interest List: LMHA may have a staff person appointed for placing people on the YES Interest List; Parent may be asked diagnosis of the child; Letter of Placement on YES Interest List will be mailed to the parent in about two weeks; Parent will be responsible for updating contact information. The waiting time for the Interest List depends on the LIDDA

Other State Programs Children with Special Health Care Needs (CSHCN) – similar to Medicaid Children with “physical symptoms” not “mental, behavior, emotional or delay in development” meaning a subset of children with disabilities and\or chronic illness: Income based – up to 200% of poverty similar to CHIP; For residents of Texas; Ends at age 21 except for adults with Cystic Fibrosis; Waiting list is about a one to two year wait Blind and Visually Impaired Services - Blind Children’s Vocational Discovery and Development Program; case management Deaf and Hard of Hearing - resource

Useful Websites Texas Health and Human Services http://hhs.texas.gov Texas HHSC STAR Kids Handbook https://hhs.texas.gov/laws- regulations/handbooks/star-kids-handbook Community Now http://communitynowfreedom.org/Medicaid_Waiver_Program s.php Navigate Life https://www.navigatelifetexas.org EveryChild Texas www.everychildtexas.org/ Texas Council for Developmental Disabilities http://tcdd.texas.gov/ Texas Parent to Parent htttp://www.txp2p.org/

Texas Children’s Health Plan Education Department