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1
Citizen’s Guide to Family Care
2009
Survival Coalitionof Wisconsin Disability Organizations
2
Vision Statement
The Survival Coalition of Wisconsin Disability Organizations is committed to creating a society in which:
•People with disabilities of all ages receive the services and supports needed, throughout their life span.
•People with disabilities can choose to live their lives as they wish and be full participants in community life.
Survival Coalitionof Wisconsin Disability Organizations
3
Mission Statement
The Survival Coalition of Wisconsin Disability Organizations will be a leader in
influencing the political process about resource allocation, laws, and policies
which will advance our Vision.
Survival Coalitionof Wisconsin Disability Organizations
4
Guiding Principles1. Survival Coalition is a cross-disability coalition which
works in partnership with local organizations, coalitions, consumers, advocates, and families throughout the state and makes intensive efforts to ensure that our priorities promote and advance the wishes of people with disabilities and their families.
2. Survival Coalition will promote policies, programs, and practices that advance integrated, individualized, community-based supports and services.
Survival Coalitionof Wisconsin Disability Organizations
5
The Basics of Family Care
How Does Managed Long-Term Care Work?
Survival Coalitionof Wisconsin Disability Organizations
6
Family Care: provides long term care (LTC) services for
adults with physical disabilities or developmental disabilities, and for elderly people
is a managed care program
will eventually replace county LTC services, and along with IRIS, will be the only way for people to get a broad range of LTC services
7
Family Care: is administered by a Management Care
Organization (MCO)
can only be implemented in counties where there is an operating ADRC (Aging & Disability Resource Center)
was designed to be flexible, cost effective, comprehensive, and to give enrollees a real say in developing their service plans
includes an option for “self-directed services”
8
Within the context of Managed Long Term Care, Family Care:
requires/authorizes the MCO to determine what LTC services you will receive, and to coordinate and oversee these services
is funded through a “capitated rate” (an average payment per person per month for every person enrolled in the program)
empowers each FC enrollee to have his/her own individual FC plan and budget which is to be based on individual needs and desired outcomes
9
Family Care: places a lot of power in the hands of the MCO
requires the MCO to select the LTC providers which will be in the MCO’s “provider network”
gives the MCO the option of directly providing and/or contracting for services
could be administered by an MCO which is a county, a consortium of counties, a private corporation, or a Family Care district
10
Family Care includes the following services that were available under COP and CIP: Adaptive aids Adult day services Case/care
management services Consumer-directed
supports Consumer education
and training Counseling &
therapeutic services
Financial management services
Habilitation Supportive Home care Vocational supports Home modifications Daily living skills
training
11
…And some of the services currently available via the Medicaid Card: Personal Care Home Health Care (e.g.
PT, OT, Speech Therapy, Skilled Nursing, Respiratory Care)
Specialized Transportation
Durable Medical Equipment
Counseling & Therapeutic Resources
Case Management Medical Day Treatment
12
Aging & Disability Resource Centers
(ADRCs): create a single point of entry for people enrolling in Family
Care
assess the eligibility of people with disabilities and elderly people to enroll in Family Care
provide information on Long Term Care services to anyone who requests it
provide free LTC “options counseling” to people considering admission to nursing homes, CBRFs, adult family homes, or assisted living
13
Aging & Disability Resource Centers:
provide free benefits counseling on the full range of disability benefits
have an emergency response capability
engage in a variety of prevention and early intervention activity
have staff who can make home visits if the person cannot get to the ADRC location
14
Family Care is Based Upon Meeting “Personal Experience Outcomes”Personal Outcome
Measure Some Implications to Consider
1. I decide where and with whom I live
-choice of home, housemates, roommates, live-in staff, supported or group living
2. I decide how I spend my day
-integrated employment or sheltered work?
-desired income
-choice of career
-choice to contribute to others
15
Family Care Outcomes3. I make my own decisions regarding my supports and services
-what support I want, how much support, how I want to receive it, and from whom
4. I have relationships with family and friends I care about
- including support if needed to maintain or create these relationships
5. I do things that are important to me
-realizing that what a I now do may or may not be important to me
16
Family Care Outcomes
6. I am involved in my community
-includes contact and opportunity for relationships with non-disabled people
7. My life is stable -continuity of services unless I wants a change
8. I am respected and treated fairly
-at work, at home, in dealings with the MCO and providers
17
Family Care Outcomes
9. I have time, space, and opportunity for privacy
-an essential part of having a place that is and feels like home; important of privacy in receiving personal care
10. I have the best possible health
-includes prevention measures, regular check-ups, linkages between LTC and primary care
18
Family Care Outcomes
11. I feel safe -includes adequate support and staff to ensure safety
-safety issues are not an excuse for institutionalization
12. I am free from abuse and neglect
-includes prevention as well as reporting and corrective action
19
Show Me the Money
How do I get the outcomes and support I need?
Survival Coalitionof Wisconsin Disability Organizations
20
Long-term Care Functional Screen: used to establish level of care for Family Care
eligibility and to provide information helpful to people making decisions about how to meet their long-term care needs
an inventory of needs or list of activities that people need to perform, or have performed for them in the course of every day life.
gathers information about whether a person needs help, and how much help they need in performing activities.
21
Long-term Care Functional Screen cont. looks at both activities of daily living (ADLs) and
instrumental activities of daily living (IADLs). asks questions about cognition, behavior,
diagnoses, medically-oriented tasks, transportation, and indicators for mental health problems, substance abuse problems and other conditions that put a person at-risk for institutionalization.
differences in services available to nursing home level of care individuals and non-nursing level of care individuals.
22
Comprehensive Assessment
A look at your needs, strengths, resources, and preferences
There must be a face-to-face meeting with you to discuss your needs and preferences
You have a right to have to have other people involved including family, friends or an advocate.
23
Comprehensive Assessment cont.
MCO staff must ask you what you want your life to be like, and what you see as your most important support needs.
Your answers must be used in deciding what personal outcomes your service plan will try to achieve for you.
Even if you are already receiving some services, MCO staff must help you identify any needs and personal outcomes that you have that are not being met.
24
Family Care Outcomes I decide where and with whom I
live
I make decisions regarding my supports and services
I decide how I spend my day
I have relationships with family and friends I care about
25
Family Care Outcomes cont.
I do things that are important to me
I am involved in my community
My life is stable
I am respected and treated fairly
26
Family Care Outcomes cont.
I have privacy
I have the best possible health
I feel safe
I am free from abuse and neglect
27
Resource Allocation Decision Method (The RAD)
The MCO is responsible for helping you to achieve your personal outcomes, but also considers cost in designing services and choosing providers.
Most MCOs do this through a process called the Resource Allocation Decision (RAD) Method.
28
Resource Allocation Decision Method
Designed to develop cost-effective (not necessarily the same as “cheapest”) way to meet individual’s outcomes;
Starts with person defining individual outcomes;
Creatively looks at options; Includes gifts and strengths of person, family,
community; May sometimes be a process of negotiation
29
Read Me My Rights
Citizen Rights and Protections Within
Family Care
Survival Coalitionof Wisconsin Disability Organizations
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Rights – ADRC guaranteed
Information and assistance
Advocacy Long Term Care
Options Counseling Benefits Counseling Prevention and Early
intervention
Choice Counseling Enrollment assistance Disenrollment
counseling Transitional services Emergency response Grievance system
31
Rights—MCO Guaranteed: Opportunity to self manage some or all of
your supports Comprehensive Assessment within 30
days of enrollment that:-identifies your needs and
strengths -helps you identify LTC outcomes e consistent with your values and preferences
32
Rights—MCO Guaranteed:
Full participation in development of your individual service plan (ISP) within *60 days of enrolling, including:
-The right to assistance from anyone you choose in developing the ISP
The ISP must comprehensively address all your LTC needs while assisting you to be as self reliant as possible
* For people transitioning from COP or CIP, this planning process is within the 1st 6 months
33
Rights—MCO Guaranteed:
Participate in selection of service provider agencies
Request out of plan service providers under certain circumstances
Grievance system
34
General Rights of All People Enrolling in Family Care: Freedom from unlawful discrimination in
applying for or receiving the family care benefit
Accuracy and confidentiality of client information
Prompt eligibility, entitlement and cost-sharing decisions and assistance
35
General Rights, cont.
Access—in a form or format that is accessible to you—to personal, program and service system information
Choice to enroll or disenroll in a MCO at any time
Information about and access to all services of resource centers and MCOs
36
General Rights…
Support for all clients in understanding their rights and responsibilities related to family care
Assistance from Resource centers, MCOs and county agencies in identifying all rights to which a person is entitled
37
General Rights…
Notice of any intended action at least 10 days in advance and in writing of any adverse action – termination, suspension, reduction of eligibility or services
File Grievances and/or request Fair Hearings
Seek assistance from the Independent Advocate/Family Care Ombudsman
38
Advocacy and Appeal Rights – 3 optionsMCO grievanceDHS complaintState Fair Hearing
39
Rights
Receive written notice of any adverse action, including termination, suspension or reduction of eligibility or covered services
File a grievance and/or request a fair hearing
40
Notice of Adverse Action – must be in writing and must contain: Intended action of county agency, ADRC or
MCO Effect action will have on services member is
currently receiving Any law that supports action Member’s right to file grievance, appeal,
request dept. review or fair hearing
41
Contents of Notice of Adverse Action, cont’d Info on how to file grievance or appeal or
request fair hearing Member’s right to appear in person before
ADRC, agency or MCO Info regarding agencies that can assist with
grievance, review, hearing Member’s right to review free copies of
record for appeal and how to request copies Right to continue services, pending appeal
42
Continuing Benefits Pending Appeal Members must receive notice of right to
continue current services MCOs may not deny a request to continue
services However, member may be responsible for
cost of continued services if loses appeal and no hardship granted
43
1. MCO Grievances
Member may file grievance with MCO Member may seek internal MCO assistance
in doing so MCO’s “Member Advocate” is to help
member pursue rights, but does not represent member
MCO’s Grievance Committee will hear grievance
44
2. Grievances to DHS – 1 of 2 Can be filed locally with MCO or at state level
with DHS DHS process for review, investigation,
analysis of client grievances and appeals for informal resolution if: Client files grievance/appeal with DHS Client requests DHS review of county agency,
ADRC or CMO
45
Grievances to DHS – 2 of 2
DHS required to complete review within 20 days of client request, unless client and DHS agree to extension
Concurrent review process whenever DHS informed that FC applicant/member has requested fair hearing
Grievances or appeals from MCOs, filed with DHS, handled by MetaStar
46
3. Fair Hearing
May request without first filing for grievance Must request within 45 days after receipt of
notice of a decision in contested matter Receipt presumed 5 days after notice date Conducted by DHA’s ALJs
47
Grounds for Fair Hearing – 1 or 2 Denial of eligibility or reduction of FC
benefit amount Cost-sharing determination Denial of entitlement Failure to provide timely services and
support items in a care plan Reduction of service/support items
48
Grounds for Fair Hearing – 2 or 2 Service plan unacceptable because
Unacceptable place to live Care, treatment or support items insufficient to
meet member’s needs Care, treatment or support items are
unnecessarily restrictive or unwanted Termination of FC benefit Recovery of FC benefit payments
(All others: must first seek request by DHS)
49
Hearing-Related Rights
May choose representative May inspect records relevant to
grievance/review/fair hearing Receive copies of documents free Decision within 90 days of receipt of request
for fair hearing
50
Family Care Ombudsman
Applicants and enrollees age 18-59:Disability Rights Wisconsin www.disabilityrightswi.org ● Under contract with DHS to provide advocacy● All services are free ● Independent ● Experienced with disability and LTC issues ● Advocacy Specialists and Attorneys
Applicants and enrollees age 60+:Board on Aging and Long Term Care1-800-815-0015www.longtermcare.state.wi.us
51
DRW’s Family Care Ombudsman Program – Types of Assistance Provide info and education on rights Inform applicants and members of services
and supports in benefit package Investigate complaints Resolve and mediate issues Work with enforcement agencies Represent consumers in grievances and
hearings
52
Disability Rights Wisconsin
Consumers are encouraged to contact the DRW offices nearest them:
Madison: 608-267-0214 Toll-free: 800-928-8778
Milwaukee: 414-773-4646 Toll-free: 800-708-3034
Rice Lake: 715-736-1232 Toll-free: 877-338-3724
TTY/Textnet for all offices: 888-758-6049
53
Self-Directed Supports in Family Care and IRIS
Thinking Outside the Box
Survival Coalitionof Wisconsin Disability Organizations
54
When you need support to help you live in the community, you have the right to make choices about the services you get to support you. This is called Self-Directed Supports.
55
Self-Directed Supports
… are part of our state law within Family Care:
“Each person may arrange for, manage and monitor his or her family care benefit directly, or with the assistance of another person.”
56
Self-Directed Supports
Are also part of a new, flexible Self-Directed Supports Waiver (IRIS)
Designed specifically for Self-Directed Supports
Began in July, 2008
In counties that are included by Family Care
57
Self-Directed Supports Can Help People Describe and Achieve the Outcomes They Want
SDS includes much more than hiring your own “staff”
58
Key Self-Directed Supports & Long-Term Care Outcomes
I decide where and with whom I live!
I decide how I spend my day!
I make decisions about my supports and services!
5959
Care management for all members incorporates consumer participation and respect for choice
Self-Directed Supports are a new way for people to direct their LTC goods, services and supports
Available to all Family Care members
Each member can choose which supports to direct
Self-Directed Supports inManaged Care
6060
Self-Directed Supports inManaged Care
Members play a more active role Deciding how resources are allocated for services and
supports to meet personal outcomes -– even to buy services or supports that are not part of the MCO’s benefit package
Selecting their own workers, including family, friends, neighbors
Employing workers (or having an agency serve as the employer of workers the member chooses)
Partnering with others Helping create new agencies
6161
Self-Directed Supports inManaged Care
Overview of how it works: MCO should ask person about their interest in
SDS as part of initial conversation and assessments
MCO can provide help if the member needs assistance with learning self direction
Can include selecting, creating, directing where and who to live with, what to do during the day, and nearly all other long-term care supports
Can be just selecting and directing workers
62
The care management team makes a budget available to member to direct the supports the member has selected: Member creates an “SDS Plan” for how the
resources will be used Care management team approves plan Member carries out the plan
Self-Directed Supports inManaged Care
6363
Self-Directed Supports inManaged CareFor supports or services that a person purchases
directly, rather than through an agency, an MCO makes assistance with self direction available thru:
Fiscal intermediary - provides strictly payroll support – checks, withholding, tax filing, etc.
Co-employment agency – functions as “Employer of record” and offers help with recruiting, screening, interviewing, hiring, training, firing workers
64
Interdisciplinary Team (IDT) Role: IDT continues to support members
Manage supports not directed by member Authorize resources available to member Secure training/TA for members or workers Monitor member’s use of resources Monitor member’s health and safety
Self-Directed Supports inManaged Care
6565
IRIS: Self-Directed Supports Waiver
Include –participants are supported to be active members of their communities
Respect – participants’ preferences are honored; participants direct their own lives and long term supports.
I – (the participant) am in charge of my own plan.
Self-Direct – includes me managing my own services and life.
6666
• New option in how persons receive LTC goods, services and supports
• Alternative to Managed Care
• Began July 1, 2008
• Participant access is synchronized with Family Care expansion in each county
• New option in how persons receive LTC goods, services and supports
• Alternative to Managed Care
• Began July 1, 2008
• Participant access is synchronized with Family Care expansion in each county
67
IRIS IRIS is offered to all persons including individuals who have guardians.
Using the individual’s Long Term Care Functional Screen, an individual allocation is calculated by the local ADRC.
initial projected allocation may be reviewed/adjusted
updated annually to reflect the cost of living adjustment (COLA)
includes ongoing waiver long-term care costs
People with current functional screens may learn their projected IRIS allocation before making the choice to participate by asking their county case manager, their MCO care manager, or contacting the ADRC.
6868
IRIS
Individuals who choose IRIS will coordinate and direct all of their services. Family, friends, or others may help.
Assistance and support is provided through an “Individual Consultant”
People may also choose to hire a support broker if they can budget those costs within their individual allocation.
People also have access to services through Medicaid and/or Medicare.
69
IRISIRIS participants:
• Make their own decisions within their allocated budget about the goods, supports and services they will receive.
• Make their own decisions about who provides these supports and services.
• Make their own decisions about when and where supports and services are received.
7070
IRIS
IRIS participants select:
• Their own physician and other health care providers who accept Medicaid as payment just like in Family Care.
• Persons eligible for Medicare receive prescription drug benefits through the Medicare Part D plan they choose.
• DHS is working on allowing IRIS participants to self-direct their Medicaid Personal Care Card services.
7171
IRISAllowable Supports and Services include:
• All community-based, long-term care waiver services; and
• A new option: Participant Customized Goods and Services: defined as … a service, support or good that enhances the participant’s opportunities to achieve outcomes related to living arrangement, relationship, community inclusion, work and functional or medical status.
• Any community setting people choose ( including Adult Family Home, CBRF and RCAC; however the IRIS budget was not designed to include these three settings).
72
IRISRole of the ADRCs (and counties for people
transitioning from CIP and COP) Provide information and counseling about the
individual’s publicly funded long-term care choices
• Provide key information to individuals about IRIS, which includes the individual’s budget allocation (generated from the Long-Term Care Functional Screen)
• Refer the individual who chooses IRIS to the Independent Consultant Agency.
7373
IRIS
State DHS manages two statewide contracts:
1. Independent Consultant Agency (The Management Group) oversees independent consultant activities and provides overall program management
2. Financial Services Agency (Milwaukee Center for Independence) completes criminal background and employment checks, claims payment functions, and assorted program reporting.
7474
IRIS
Independent Consultant Agency (ICA):
Provides an orientation to IRIS
Approves and monitors participant plans
Tracks participant health and safety issues
Meets State oversight obligations
Maintains a 24/7 toll free number with on-call service after regular business hours
7575
IRIS
Independent Consultants:
assist participants as necessary and desired by each person;
help people stay eligible by keeping track of program requirements;
secure training/TA for participants;help participant identify when and how to get in
touch with the ADRC to request an updated functional screen when there is a change in condition.
7676
IRIS
Financial Services Agency (Milwaukee Center For Independence):
Completes required criminal background checks, employment verifications, and also completes all payroll tasks;
Receives and monitors cost-share payments;
Pays claims as listed on support/service plan after participant authorizes payment
7777
IRIS
Financial Services Agency (cont):
Provides orientation and skills training program to participants who hire their own support persons
Maintains a toll free number with call service during business hours and voicemail service after regular business hours
Sends monthly spending reports to participant, ICA and Department
7878
IRIS
IRIS Quality Management assures:
Quality Standards are followed;
Each participant has quality management plan;
A back-up plan for worker no-shows or other urgent situations is developed by the participant and the Independent Consultant;
Critical Incidents are reported and tracked by the Independent Consultant Agency.
79
Thinking Outside the Box
Breaking free of the old service models … creating
your own supports … in the company of others
80
Long-Term Care “Outcomes” I decide where and
with whom I live
81
Supported Living
Each person lives in their chosen home as an owner or tenant and support comes "into" the home.
Everyone can be supported within their home with support customized for how much or how little is needed.
People can choose who they wish to live with, and who they wish to provide support
82
Supported Living The support provided is flexible and
based on the person's needs, preferences and wishes.
The right kind of support is not only about professional staff: informal and 'natural' support from families and others is vital.
83
Long-Term Care Outcomes
I decide how I spend my day.
84
Customized Employment Individualized! Relies on a process of discovery,
NOT assessment, to determine the true strengths, requirements, and interests of a job seeker with a complex life.
Meaningful work in the community for a competitive wage.
Meets the needs of both the market place/work place and the job seeker.
Results in a win/win work relationship Supported employment is one but not the only
means to find and maintain a job Emphasis on reaching out to family, friends,
community
85
Integrated Employment:
Most people with disabilities served by the long-term care system are not working in integrated employment: most are currently unemployed or employed in facility-based settings, some making sub-minimum wages.
86
Employment in FC for People with Developmental Disabilities - 2006
Number Percent of
Employed
Percent of
Total Clients
Prevocational/
Sheltered Workshop
478 61.4% 32.1%
Community 366 47.0% 24.6%
From Home 5 0.6% 0.3%
Total
Employed778 52.3%
Total
Clients1487
87
Employment in FC for People with Physical Disabilities - 2006
Number Percent of
Employed
Percent of
Total Clients
Prevocational/
Sheltered Workshop
36 25.2% 1.9%
Community 90 62.9% 4.8%
From Home 18 12.6% 1.0%
Total
Employed143 7.7%
Total
Clients1859
88
Family Care, IRIS & Integrated Employment
Offer a more comprehensive benefit package
People with physical disabilities have access to long-term support services for employment which were not always available under COP waiver.
Family Care can pay for personal care in the workplace, which was not available under COP, CIP or MA card. IRIS is working on adding that feature through self-directed personal care.
Family Care and IRIS cover the cost of transportation for people working in integrated employment.
89
Family Care, IRIS & Integrated Employment
Flexible care plans
Can include mix of employment and non-employment activities, to reflect individual’s preferences.
People can utilize creative approaches, including things like:-Paying co-workers for transportation; paying for
people to participate in car pools.-Paying employers for training and co-workers for
long-term on-the-job support. -Supporting micro-enterprise, self-employment & co-ops.
Facility-based pre-vocational and day services remain an option.
90
Family Care, IRIS & Integrated Employment
No waiting lists (after initial Family Care phase-in)
MCOs & IRIS can pick up long-term support when DVR funding runs out.
Young people leaving high school with a community job can get support from IRIS or the MCO to keep that job.
91
Self-employment (micro-enterprise) is another option for work. Provides an option for a person to create their own
work based on their interests, connections and skills.
“The type of business that a person with a disability can operate is limited only by imagination” US Department of Labor Office of Disability Employment Policy
It is a choice. It is not something everyone may want to do.
92
What is self-employment?
Selling or producing a product, or service, or both. The person owns the business as a sole
proprietorship, general partner, LLC or independent contractor.
Part or full-time work activity. Sometimes referred to as microenterprise. Help to learn more available through Pathways
(Shannon Munn at [email protected])
93
Why people are choosing self-employment….. Choice and Control Independence and Creative
Freedom Natural Skills/Talents Inclusion and Connections Expanded Work Opportunity Availability of Supports Accumulation of Wealth When given the choice,
people with disabilities pursue self-
employment at a slightly higher, rate
than the general population.
When given the choice, people with disabilities
pursue self-employment at a slightly higher, rate
than the general population.
94
Family & Member-Governed Services and Cooperatives
Member owned or governed
Help people control where they work, where they live, how they get support
Can create what people want
Empowering to families and individuals
May decrease long-term costs of services
Support from the system
Often increase connections with community (ongoing assistance on these options is available through
Pathways to Independence – contact Dennis Harkins at [email protected])
95
SDS Offers High Expectations for:
Regular Lives
Employment and Careers
Contribution and Meaning
A Home of One’s Own
Community Inclusion
96
Last Thoughts
SDS offers flexibility and creativity through IRIS and through Family Care
Remember the Long-Term Care Outcomes …
Particularly …
I decide where and with whom I live!
I decide how I spend my day!
I make decisions about my supports and services!
97
Importance of encouraging and supporting members and their families to:
Purchase, imagine, and create better support arrangements
Supported Living Customized Employment Micro-Enterprise Cooperatives Member and family governed services and supports
Use these new opportunities to say, “Nope, don’t want this any more” and negotiate something new
Oversee and guide implementation of supports and services
Last Thoughts (continued)
98
Good SDS Resources
There is a lot of good information and support available about SDS --- people don’t need to do this on their own:
Self-Determination Wisconsin (a Wisconsin DD Board project) Dennis Harkins: [email protected] Naomi Silver (River Falls): [email protected]
Wisconsin Independent Living Centers: ilcw.org/ilclist.html
Websites & toll-free phone numbers Wisconsin DHS Long-Term Care site: http://
dhs.wisconsin.gov/ltcare/ IRIS information through ICA: 1-888-515-IRIS (4747), or on the
web at wisconsin-iris.com/ IRIS information through Wisconsin DHS on the web at http://
www.dhs.wisconsin.gov/bdds/IRIS/ Self-Determination Wisconsin (a web site on SDS in
Wisconsin): sdwisconsin.org Wisconsin/Waisman: SDS Resource Library:
cow.waisman.wisc.edu/sdswi.html
99
A Family Care Reality Check
What’s Working and What’s Not
Pointers for Making it Work
Survival Coalitionof Wisconsin Disability Organizations
100
Family Care: What’s Working
Adult waiting lists are gradually being eliminated
Apparent reduction in new admissions to nursing homes
Family Care enrollees can get all their LTC services via one comprehensive program (not a patchwork of COP, CIP, county tax dollars)
101
Family Care: What’s Working
Family Care has a built-in mechanism for annual rate adjustments for the entire MCO—this may or may not result in an increase in anyone’s individual budget
ADRCs (Aging & Disability Resource Centers) are providing useful information and free benefits counseling to people
102
Family Care: What’s not working
Pre-enrollment counseling (particularly by counties for people receiving COP and CIP) tends to be inadequate
Some enrollees are not given an adequate opportunity to participate in the development of their Family Care plans
Plans tend to begin with what was already in place --- too often there is little commitment to let people know they can change
Not enough commitment to informed consumer choice
103
FC: What’s not working
Some people are not informed or are misinformed about the self-directed supports option
Some people denied the right to keep their current providers (in some instances this is because the MCO is paying inadequate rates)
Continued over-reliance (or increased reliance) on traditional group homes and large (3-4 person) Adult Family Homes
104
FC: What’s not working
No maximum size (# residents) for CBRFs in FC
Continued over-reliance (or increased reliance) on facility-based services
Inadequate mental health services for many FC enrollees
105
Pointers on Making it Work
Insist on playing an active role (with family or friends if you wish) in the development of your Family Care plan
-it’s up to you to specify the outcomes
106
Pointers on Making it Work Assert your choices about:
where to live who to live with what kind of job to pursue level of service you need
(i.e. number of hours) which provider agency(ies) you want
to get services from which staff you would like to work with
107
Pointers on Making it Work
Make sure your individual FC plan provides the mental health services you need (if any)
Ask for an in-depth explanation of both the self directed supports option inside Family Care, and IRIS (the Self Determination Waiver)
Use your complaint and appeal rights if FC is not working for you
108
If you’re transitioning from COP or CIP to Family Care:
This is an opportunity to improve your life. You can ask for a change in the type of service, level of service, provider agency, staff, where you live, or where you work:
Would you like a job in the community with better wages?
Would you like to live in your own home?
109
…transitioning from COP or CIP to Family Care:
If you were told when you first got COP or CIP services that “there isn’t enough funding to meet your needs…,” you should be able to fix that with Family Care or IRIS:
-they are designed to be comprehensive and cost-effective
-your ideas, family, friends and creativity are an important resource
110
If you’re coming from the waiting list into Family Care:
The MCO has 24 months to bring everyone off the waiting list
Counties and ADRCs establish your place in the queue
There is no requirement for the ADRC to give a higher priority to people in crisis (but typically will do so)
Don’t wait until the ADRC contacts you—start thinking now about what outcomes and services are important to you
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If you’re coming from the waiting list into Family Care :
Consider all your options …Learn the differences among “regular”Family Care; The self-directed supports option within Family Care; IRIS; Learn about what is currently offered by service
providers; Join with others to think about creating supports.
If you prefer to wait until the end of the 24 month period to begin receiving services, let the ADRC know that—they will probably accommodate you.
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If You are making the Transition from High School
No waiting lists for services (after initial phase-in) Commitment for long-term funding of employment-related
support, thus: DVR funding after high school MCO or IRIS funding after high school (typically after initial DVR
funding) No need to wait until age 21 to graduate Opportunities for creativity and imagination by students,
families, teachers, MCOs, providers, communities … support for post-secondary education; self-employment; career discovery; co-op development; integrated employment … your idea here: ______________________________ .
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Before Leaving School:A Few Tips
Start learning what services and supports are available as early as age 14
You can ask the ADRC to determine your eligibility when you are 17 years, 9 months old
You can graduate at age 18 or stay in school and obtain support through Northern Bridges or IRIS
Meet with DVR
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Before Leaving School:A Few Tips
Start creating a clear vision to begin your
adult life: Where do you want to work or go on to college or tech
school? Where do you want to live? How do you want to spend your free time? What kinds of support will you need?
Meet with a Disability Benefit Specialist so you will know what your post-high school finances will look like.
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Already working?
If you are leaving high school with a paid job you would like to keep, and you need support to keep your job, begin to plan for continuing that support immediately.
Some people will not be eligible for Family Support or IRIS at all for up to 24 months after the date FC begins in their county --- but may well be eligible for DVR funding.
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Closing Session