Understanding Services: Where and How to Get Help Jennifer Mahan - Director of Advocacy & Public Policy

What are we going to talk about? What are services and how are they funded? How is the system managed? Where do I get help for my child/self/family member? Q&A

What are Services? What are they? Services are extra help or assistance for your family member with autism that can be applied for through the “mental health system.” Families who have family members with disabilities or people who have disabilities can apply for these services. Services can include help linking up with other resources, one on one instruction for people in their homes and communities, training for families and respite care. Services are based on a plan developed after assessments and an eligibility determination process. Explain “the mental health system” : covers three disability areas, including DD

What Are Services? Who Qualifies Qualification for some NC services is based on need – not income! Some services are limited to low income people A diagnosis of a disability does not guarantee that someone will qualify and receive services. Criteria for qualifying for NC need based services Must have substantial, functional limitations in 3 or more areas of life activity Life Activities: Self-care, understanding and use of language, learning, mobility, self direction, capacity for independent living No entitlement to services for intellectual and developmental disabilities, including autism.

What are Services? Funding Who funds services? Private Pay/Private Insurance/Other sources Schools (for services during school day for ed.) State Funds/IPRS and “B3” Medicaid Services vary across the state depending on who funds them and how much funding exists. Services also vary depending on the availability of qualified providers. Main issue is funding. County funding varies, so even within the same LME those in some counties have more funding and more services than those in others. State funding to counties is based on historical allocations and (some) on poverty formulas.

What are Services? Funding Private Pay: Self (you) pay Insurance: Coverage varies, may have coverage for physical health, mental health care, OT, speech therapy but all autism services not covered Other: Early intervention may be covered though public health, military via Tricare and ECHO Schools: Under Federal law (IDEA), may cover those things that assist with the child’s learning and education Individuals with Disabilities Education Act

What are Services? Medicaid Medicaid (federal funds with state match) “Traditional” Medicaid Doctor visits/Emergency Room/Medication ICF-MR (Intermediate Care Facilities) Other LTC: Personal Care, Adult Care Home, Nursing Home Medicaid “Enhanced” Services Mental Health and Addiction services and supports “B3”- basic supportive MH, IDD, SA services EPSDT – Early Periodic Screening Diagnosis and Treatment Catch-all funding for children – but not habilitation services Medicaid Home and Community Based Waivers under Managed Care NC “Innovations” Waiver under managed care Other CAP programs for children, disabled, elderly Medicaid basics: The Federal government’s Medicaid program was designed to assist low-income individuals in accessing health care services by matching state funds with Federal funds for approved health services. To qualify, people must meet income and asset criteria, as well as fit certain categorical requirements such as being: on the Temporary Assistance for Needy Families Program, a low income pregnant woman, disabled, or a child from a low income family. Most adults, and especially those without children, do not qualify for Medicaid. Some of this will change in 2014 when new health care laws go into effect. Medicaid classifies services and populations as “optional” and “mandatory.” The Federal government only requires that states cover limited populations and with limited services (for example, low income pregnant women for prenatal care and childbirth, children in foster care) – these are mandatory populations and services. In addition, they allow states to cover “optional” populations and “optional” services using the same matching fund formula. Every state chooses who to deliver services to, and what kinds of services; every state Medicaid plan and program is different. The Federal government through the Center for Medicare and Medicaid Services (CMS) approves those plans for how states will provide those services. Medicaid covers health services and supports that are medically necessary; it does not, for example, cover room and board in facilities, transport to school, and other related supports. Once a plan is approved, those populations identified under the plan are usually “entitled” to the services outlined in the plan. One of the reasons states struggle with Medicaid budgets in difficult economic times is that more low income people are eligible and entitled to health care. To confuse things more, some programs under Medicaid – such as “waivers” - are not an entitlement. A limited number of people can receive a waiver and not everyone eligible gets services. States in conjunction with the Federal government determine who and how many will be served; when the slots are full they do not open more to serve all who qualify. All services for treatment and support of people with MH, DD and SA are considered optional under Medicaid, as are all those populations. There are some exceptions to this, such as pregnant drug users or kids under Early Periodic Screening Diagnosis and Treatment (EPSDT), although enforcing services for kids under EPSDT has proven to be difficult. Other optional services are dental, orthopedics, vision, etc. The NC Legislature often talks about eliminating optional services because we are not required to provide them.  They have yet to do so – though other states have. Advocates regularly make the argument that these Medicaid services are a great option because people stay in communities/at home and they cost less than institutional settings. That does not change the fact that the Feds don’t require states to offer these options.

How is the services system managed? Federal and State government provides overall funding and policy direction ($, laws, regulations) State (MHDDSAS and Medicaid) directs funds, policies, oversight, accountability LME MCO: Local Management Entity manages provider network, authorizes services, provides care coordination Private providers provide services and supports Services are paid for on a fee-for-service basis, but funds are managed using “capitation” : provider bills, LME pays out of a set amount of funding LME- This stands for Local Management Entity which is the name for the mental health, developmental disability and addictive disease agency for different geographic areas within the state. Explain The LMEs are responsible for managing, coordinating, facilitating and monitoring the provision of services in the area served. All the LME’s in the state fall under the management of the Division of Mental Health, Developmental Disabilities, and Substance Abuse which is a division of the Department of Health and Human Services

What do we mean by “Medicaid Managed Care?” HMO type model: pre-paid, shared risk healthcare Local, state and federal funds pooled into a per member per month (PMPM) rate paid to LME/MCO (“capitation”) LME/MCO manages funds & is responsible for cost overruns, sets guidelines w/ state regarding use of $ Payment and rate structure may vary Limits choice of provider: LME determines Replaces case management with Care Coordination and Community Guide LME/MCO responsible for utilization review, plan development, resource allocation, fiscal management, care coordination. Health Maintenance Organization – they get a set amount of money to care for a group of people. The Medicaid program allows states to use “waivers” to manage Medicaid services using this type of model. Its called a waiver, because the state is removing or “waiving” the typical parts of a Medicaid program in order to operate differently. I this case, things that are being waived are the rules that allow “any willing provider” to provide services. In addition, managed care typically allows for more flexibility in the types of services that are offered and focuses on providing services and treatment early to prevent problems, using more prevention, rather than paying for costly hospital, inpatient, or emergency care.   Managed Care, Medicaid and 1915 Waivers Medicaid allows states to utilize health maintenance organization (HMO) type managed care models in the design of its Medicaid programs. States like NC must apply for a 1915 (b) and/or 1915 (c) waiver to carve out services for people with mental health, developmental disabilities, or addictive disease/substance abuse needs (MHDDSAS) and create a pre- paid, shared risk managed care program to deliver home and community based and or long term care services. 1915 (b) waivers limit choice of provider, therefore placing limits on the number and type of providers and (c) waivers allow for long term care services to be delivered in community settings under managed care. At its most basic, funding from state and federal sources, including funds that would be utilized for institutional and hospital care, are pooled together and the management entity is paid a per member per month (PMPM) rate to deliver services and supports. The incentive is to keep people “well” and out of more expensive care because those funds are retained and can be used to expand available services. The managing entity in North Carolina would be the Local Management Entity (LME) although other places use private HMOs or government agencies. LMEs can determine which services to provide, who provides those services in the wavier region and the rates to be paid. In the NC proposed model, the state and the counties share the financial risk; if they run over PMPM costs they cannot get more funds from the Federal government and must absorb the cost. North Carolina has been operating 1915 b and c managed care waivers in the Piedmont LME for several years. The state has gotten legislative approval to apply for two additional waivers and CMS has tentatively approved moving forward with them. Mecklenburg and Western Highland would be the next areas to operate managed care waivers. North Carolina Department of Health and Human Services leaders have said that “Medicaid will be managed” and they see managed care waivers as an optimal way to do so. Advocates for people with developmental disabilities have a lot of questions and concerns about the need for a 1915 (c) waiver for DD. The state already has plans for additional tiers, and could utilize other options under Medicaid and the ARRA (health reform law) to offer long term care services and support. Piedmont acknowledges its difficulties in managing the (c) waiver. Advocates also fear that use of excessive cost controls in the waiver could seriously limit the scope of services and the number of people served, among other problems.

Innovations Waiver Basics I/DD home and community services waiver for people is called “Innovations Waiver” and is similar to Community Alternatives Program (CAP) Provides aggressive, goal driven, active treatment for individuals with I/DD who are not able to function safely and independently and who are at risk for placement in intermediate care facilities (ICF-MR) Served in community/home settings Looks only at individual income Uses an assessment and resource allocation to determine an individual budget for services Brief explanation of CAP Waiver: Community Alternative Programs for people with Mental Retardation/Developmental Disabilities (CAP MR/DD) is a special Medicaid program started in 1983 to serve individuals who would otherwise require care in an intermediate care facility for people with mental retardation/developmental disabilities (ICF/MR). It allows these individuals the opportunity to be served in the community instead of residing in an institutional or group home setting. CAP MR/DD is a waiver program; In this case the program “waives” income requirements by looking only at the individual’s income and not the family’s or spouse’s income. CAP waiver programs are not an entitlement – they are funded with state and federal funds for a specific number of slots based on the funding available. Other folks who are eligible but for whom there is no slot available are put on waiting lists. Right now, when a slot becomes vacant, it is frozen; over time, unless that freeze is lifted, we will lose available slots and less people will get help. North Carolina’s CAP MR/DD program provides a selection of services, depending on individual need in two tiers: a supports waiver for those needing $17,500 or less of services and supports, and a comprehensive waiver for those needing more, up to $133,000. People who qualify for CAP MR/DD are assessed, and a person centered plan is developed based on their needs and personal goals. CAP IDD has two tiers: Supports (max $17,500) Comprehensive (max $133,000)

Innovations and the “Wait List” Innovations is not an entitlement: limited slots and funds The Wait List includes those waiting for a slot in Innovations/CAP IDD The Registry of Unmet Needs includes those waiting for other services Waiver slots are generally managed on a first come first serve basis

Innovations Continued Some Innovations slots may be aside for specific populations (but not all LME MCOs can or do set aside slots): Individuals at significant risk of harm Individuals moving from another waiver Individuals receiving waiver services in another state who are transferred to NC for military service children 0-17 moving from an institution

Care Coordination Care Coordination is NOT case management Care coordinators are employed by the LME MCO Care coordinators can assist with individual support plans, but they set very broad goals (Providers will set specifics and shorter term goals) Not everyone will have care coordination, but those on Innovations should have it Meetings may occur more often over the phone, rather than in person

List of Current Innovations Services Assistive Technology, Equipment and Supplies (GPS and Personal Emergency Response included) Community Guide, Community Networking, Community Transition Crisis Services (includes some Crisis Respite, Behavioral Consultation, etc.) Day Supports Financial Support Service, for those with employer of record Home and Vehicle Modifications ($ limit over 3 years) In-Home Intensive Support In-Home Skill Building Personal Care Residential Supports Supported Employment Respite, Nursing Respite for exceptional medical needs Natural Supports Education Individual Goods and Services (setup for transition from institution) Specialized Consultation Services (Transportation is eliminated but included in provider rate for services)

What are “B3” Funding and State (Formerly IPRS) Funds? Medicaid “B3” (MCO funds) and State Funds (IPRS) that fund additional services They vary from MCO to MCO [MCO staff has info on what services are available in your area] IPRS used to stand for Integrated Payment and Reporting System and it was the mechanism though which the state - via the Local Management Entities (LMEs) and the Division of Mental Health, Developmental Disabilities and Substance Abuse Services (MH, DD, and SA)*- tracks how state fee-for-services dollars are being used. The LME authorizes the state funded services outlined in an individual’s person centered plan. Providers of state funded services bill the IPRS system for the services they provide to people. IPRS services are typically used for individuals who have no other resources to pay for services and supports. IPRS funded services are not considered an entitlement and are dependent on the availability of funding from the Legislature. ASNC works with about 10-12 LME’s as a IPRS provider of Developmental Therapies, Personal Assistance and Respite. These funds have been drastically reduced in the past couple of years.

Alliance B3 Services Alliance currently has Community Guide and Respite B3 services Alliance may have some Personal Assistance, Developmental Therapy, and Employment IPRS funded services – the availability of these servceis varies by which county you live in

Additional (b)(3) Medicaid Services (for Cardinal Healthcare Region Only) November 2012 (b)(3) Service Population Served Disability Community Guide Child (3+), Adult I/DD Community Transition Adult (21+) De-Institutionalization Service Array Child (3+), Adult (discharged from ICF-MR) Respite Child Age 3-20 MH/SA Supported Employment Adolescent (16+), Adult Individual Support Adult (18+) MH Peer Support Psychiatric Consultation

Not in Alliance or Cardinal? Check the map earlier in the presentation to find your LME MCO or view the map here: http://www.ncdhhs.gov/mhddsas/lme-mcomap10-13.pdf Check the list of local contact to find your county and LME MCO http://www.ncdhhs.gov/mhddsas/lmeonblue.htm

ASNC Services - Triangle ASNC offers services in the Triangle region: http://www.autismsociety-nc.org/index.php/get-help/direct-care/raleigh-autism-society-of-north-carolina-office Talk about how to access services and supports Alliance Website for Individuals and Families: http://www.alliancebhc.org/consumers-families Talk about applying and about Registry of Unmet Needs

ASNC Services – Cardinal and Statewide ASNC offers services in other regions of the state, including some of those served by Cardinal: http://autismsociety-nc.org/index.php/get-help/direct-care/autism-society-of-nc-services-offices Talk about how to access services and supports Cardinal Innovations Healthcare Solutions : http://www.cardinalinnovations.org/consumerfamily/ Talk about applying and about Registry of Unmet Needs/ Interest List

Being Your Own Case Manager Stay in contact with LME & care coordinator Come prepared with the goals you want to work on Work with provider agency on goals Ask what resources are available: ask for what you need Get and retain documentation of needs Document all conversations with the LME and providers (date, time, what was concern, what solutions were offered, what was outcome)

Complaints Each MCO has a grievance process that notes complaints that are not related to reductions in services Complaints can be about anything: Quality of care from provider Problems with care coordination Problems getting the right information Impact of cuts on service provider Problems getting “enrolled” in services (access) Other situations that come up Larry will discuss process

Appealing Reduction in Innovations Waiver Medicaid Services MCO must provide written notification of decision to reduce, deny, terminate services Under MCO, you have a set number of days to begin appeals process 1st step is internal review (peer review) Mediation may take place Next level is informal OAH hearing See Information on MCO website

Weblinks: Alliance LME MCO IPRS services http://www.alliancebhc.org/iprs-adult-and-child-idd-benefit-plan IDD resources http://www.alliancebhc.org/consumers-families/idd-resources Cardinal Innovations Healthcare Accessing Services http://www.cardinalinnovations.org/consumerfamily/services.asp Innovations Waiver http://www.cardinalinnovations.org/innovations/

Weblinks: NC Department of Health and Human Services Division of MH/DD/SAS: http://www.ncdhhs.gov/mhddsas/ 1915 b/c Waiver: http://www.ncdhhs.gov/mhddsas/providers/1915bcWaiver/index.htm Medicaid: http://www.ncdhhs.gov/dma/medicaid/index.htm

Contact Info Jennifer Mahan, Dir. of Advocacy & Public Policy ASNC Raleigh Office jmahan@autismsociety-nc.org Tel: 919-865-5068 Kerri Erb, Senior Director of Programs and Quality kerb@autismsociety-nc.org Tel: 919-865-5053 www.autismsociety-nc.org