autism in adulthood: what parents and guardians need to know

Autism in Adulthood: What Parents and

Guardians Need to Know

Eligibility vs. Entitlement

Special Education• Entitlement based on need• No waiting lists

Adult Services:• Eligibility criteria specific to particular

agencies • Limited funding • Waiting lists

Adult Agencies/Organizations

• Community Services Boards• Department of Rehabilitative Services• Department of Social Services• Social Security Administration• Centers for Independent Living• Institutions of Higher Ed• Department of Medical Assistance Services

Topics

• Age of Majority

• Disability Benefits and Planning

• Post Secondary Readiness, Education and Training

• Employment

• Housing and Residential Supports

• Life in the Community

Age of Majority

Topics

• Joint Bank Account

• Representative Payee

• Powers of Attorney

• Educational Representative

• Guardianship

Joint Bank Account

• Supplemental Security Income or other payments directly deposited

• Authorized automatic payments for living expenses

Representative Payee

• Manages benefit checks on behalf of person with a disability

• Spends such funds on behalf of the person with a disability

• Authority only for funds designated

Powers of Attorney

• General: may act on person’s behalf unless the person becomes incapacitated

• Durable: May act on person’s behalf even if that person becomes incapacitated

POA for Property

• Legal document granting one person authority to handle finances or property for another person

• Person with disability has legal authority

• Person with disability may revoke at any time

• Best used when person needs assistance making complex financial decisions

POA for Healthcare

• Allows a competent person to designate another to make healthcare decisions on his behalf

• May be revoked at any time

POA for Educational Decisions

• Student grants authority for others to make decision

• Can be revoked or changed

Educational Representative

• Student “unable or incapable of providing informed consent for educational decisions under the Individuals with Disabilities Education Act”

• Can be parent, family member, or other competent adult

• Easier and less expensive

• Educational decisions only

Guardianship

• Appointed by a court

• Responsible for personal affairs of an incapacitated person

• Limited or full decision making

How Do I Know If My Child Needs A Guardian?

Points to Consider

• Can the person look for and find a job?• Is the person able to manage their money?• Can the person take medications as

directed?• Is the person able to recognize when

someone is taking advantage of them, hurting them, or abusing them and protect themselves?

~ Care Coordination Notebook, page 50

Points to Consider

• Is the person able to make appropriate decisions re: marriage and intimate relationships?

• Is the person able to be on their own without risk of serious harm of injury?

• Does the person understand what is involved in managing a home?

~ Care Coordination Notebook, page 50

Points to Consider

• Is the person able to understand and communicate consent regarding legal documents and services?

• Is the person able to decide and direct what kinds of assistance or support they need or want and select who provides those supports?

~ Care Coordination Notebook, page 50

Disability Benefits

Planning for the Future

Topics

• Benefits through the Social Security Administration

• Home and Community Based Waivers

• Planning for the Future – Special Needs Trusts and Letters of Intent

Social Security Administration Benefits

www.ssa.gov

• Supplemental Security Income (SSI)

• Social Security Disability Insurance (SSDI)

Definition of Disability

“The inability to engage in any substantial gainful work activity (SGA) because of a medically-determinable physical or mental impairment(s);– That is expected to result in death, or– That has lasted or is expected to last for a

continuous period of not less than 12 months.”

» Social Security 2010 Red Book, p. 14

Supplemental Security Income (SSI)

Payments to people who:

• Are age 65 or older or are blind or have a disability and

• Have $2000 or less in income and resources

Additional Benefits

Individuals on SSI may also qualify for:

• Medicaid

• Food stamps

• Auxiliary grants

• Other benefits for individuals with low incomes

How Does My Son or Daughter Apply for SSI?

• Visit or call local SSA office to make an appointment or call toll free number: 800-772-1213

• Complete much of the paperwork online at www.ssa.gov

Social Security Disability Insurance (SSDI)

Payments to people who meet SSA’s disability criteria and

• Have work history and have paid social security taxes or

• Are an adult disabled before age 22 with a parent who is deceased or starts receiving retirement or disability benefits

Work Incentives

• Special rules making it possible for people with disabilities receiving SSDI or SSI to work and still receive monthly payments and Medicare or Medicaid

• Work Incentives and Planning Assistance Program (WIPA): https://secure.ssa.gov/apps10/oesp/providers.nsf/bystate

Home and Community Based Medicaid Waivers

Medicaid Waivers

A joint state and federal program designed as an alternative to institutional placement to provide services and supports to individuals with disabilities in their communities

Types of Medicaid Waivers

• Individual & Family Developmental Disabilities Support (DD or IFDDS)

• Mental Retardation/Intellectual Disability (MR/ID)

• MR/ID Day Support

• Elderly or Disabled with Consumer Direction (EDCD)

Individual and Family Developmental Disabilities

Supports (DD) Waiver

Must: • Have DD diagnosis, not ID• Be 6 years or older• Require level of care provided in

intermediate-care facility• Meet financial criteria

Screening for DD Waiver• Request for Screening Form - completed by

family sent to local Child Development Clinic:

http://www.dmas.virginia.gov/content/ltc-dd_wvr_request_for_services.htm

• Level of Functioning (LOF) - completed by Child Development Clinic

http://www.thearcofnova.org/docs/lof_survey.pdf

DD Waiver Services

• Day support• Companion services• Supported employment• In-home residential

support• Therapeutic

consultation• Personal care services• Assistive technology• Crisis stabilization

• Supported employment• Skilled nursing services• Attendant services• Family and caregiver

training• Environmental

modifications• Prevocational services• Support coordination• Personal emergency

response system

Intellectual Disability (ID) Waiver

• Must be:

- under 6 and “at risk” or

- over 6 with a diagnosis of Intellectual Disability

• Require level of care provided in intermediate-care facility

• Meet financial criteria

Screening for ID Waiver

Contact local Community Services Board (CSB) or Behavioral Health Authority (BHA) for Level of Functioning screening

ID Waiver Services• Companion services• Supported employment• Residential support

services• Therapeutic

consultation• Personal assistance• Prevocational services• Support coordination• Attendant services

• Supported employment• Skilled nursing services• Family and caregiver

training• Crisis stabilization• Environmental

modifications• Assistive technology• Personal emergency

response system • Day support

ID Day Support Waiver

Person must be:

• On ID Waiver wait list

• Have diagnosis of ID

Elderly or Disabled with Consumer Direction Waiver

(EDCD Waiver)• Individual must meet criteria for

nursing home care

• Screening tool: UAI

• Currently only one of four waivers without a waiting list

EDCD Waiver

• Administered by DMAS

• Apply by requesting screening from– Local health department or– Social services

EDCD Waiver Services

• Personal care

• Adult health care

• Respite care

• Skilled respite care

• Medication monitoring

• Personal emergency response system (PERS)

Planning for the Future

Trusts and Letters of Intent

Special Needs Trusts

• Enable person with a disability to have:– unlimited assets held in trust– without losing eligibility for certain

government needs based benefits

• Different from other trusts

• Written by lawyers with expertise in elder or disability law

Letter of Intent

Describes to future caregivers your and your child’s wishes in regard to:

• Residence• Education• Employment• Medical care

• Behavior management

• Social activities• Religious endeavors

After High School

Readiness, Education, and Training

Topics

• Is Your Child Ready for Life after High School?

• Planning

• Post-secondary Options

Is Your Child Ready for Life After High School?

Important Life Skills

• Waking up on their own

• Laundry on their own

• Personal hygiene

• Money management and budgeting

• Transportation

• Health and safety issues

.

Important Life Skills

• Time management

• Organization and priority setting

• Problem solving

• Academic and study skills

• Recognizing the need for help and how to get it

Self Advocacy Skills

Help individual understand and identify:• Their disability and its impact on learning

and working• Necessary supports• Their rights• Concept of “reasonable accommodations”• How to advocate for themselves• How and when to disclose

Planning

Planning

• Identify individual’s vision and goals

• Identify individual’s strengths and interests

• Explore career/technical training, or college options

• Conduct vocational and college assessments

Post Secondary Options

Post Secondary Options

• Certificate programs

• Technical trade school

• Americorps

• Community college

• Four year college

Tools for Success in Post Secondary Education

• Office of Disability Services

• Needed accommodations

• Mentor

• Relaxation strategies

• Resource notebook

• Team support

Additional Strategies for Success

• Designate who to go for help in each environment

• Identify rules and routines to go by

• Schedule regularly appointments with professors

• Consider the option of a private room to avoid roommate stress

Employment

Topics

• ASD: Strengths and Challenges

• Disclosure/Accommodations

• Employment Models

• Department of Rehabilitative Services (DRS)

• Work Incentives

ASD and Work:

Strengths and Challenges

Common ASD Characteristics

• Rigidity• Insistence on routine• High attention to detail• Excellent visual pattern skills• Preference to work in isolation• Conscientious• High interest areas

• Deficits in social and communication skills

• Attitudinal barriers

• Behavior challenges

Employment Options

Employment with Minimum Supports

• Competitive employment with accommodations and natural support

• Entrepreneurship or self employment

Good General Strategies

• Assess and address environmental triggers• Promote visual structure, predictable

routines, and clear expectations• Support preferences for clear, direct

communication • Develop proactive strategies to support new

learning, social demands and changes

Environmental Supports

Consistent workspace that lets the person know:

• Where to get supplies

• How to get help

• How to move from task to task

• What to do when one task in complete

Environmental Supports

Give tasks that . . .

• Are concrete

• Can be finished without lots of interaction or interruptions

• Will keep the person busy most of the time

Employment with More Intensive Supports

• Individual Placement Model

• Enclave Model

• Mobile Work Crew

• Small Business Model

Individual Employment

• Single supported employee in an integrated work setting in the community

• Employed by employer

• Ongoing follow-along required

• Most widely used model

Enclave Model• Small group of supported employees in

community-based employment

• May work together or be dispersed within integrated setting

• May be employed by employer or Employment Services Organization (ESO)

• Ongoing follow-along required

Mobile Work Crew Model

• Group of supported employees who travel together to one or more integrated work settings in the community to perform contract work

• Employed by the ESO

• Ongoing support required

Small Business Model

• Supported employees producing a service or product either on a sub-contract basis or as a prime manufacturer

• Supported employees, along with managers and others, comprise the business

Customized Employment

• New model

• Customizes job to meet the needs of both employee and employers

• Person centered approach

Disclosure and Accommodations

Disclosure of Disability

• Individual decision and is required to access job accommodations

• Consider why, when, and how

• Recognize responsibilities and existing protections

Workplace Accommodations

• A modification or adjustment to a job

• Workplace reasonable accommodation is the law

• Most accommodations are no cost or low cost for employer

Department of Rehabilitative Services

Role of DRS

• Assists people with disabilities to prepare for, enter, engage in, or retain gainful employment

• Participation is voluntary

DRS EligibilityIndividual must:• Have a disability that keeps you from

working • Be able to and want to work in some capacity• Need help to prepare to work, secure

employment, and stay on the job• Live in Virginia• Be eligible to work in the U.S.

Individualized Plan for Employment (IPE)

IPE identifies:

• the employment goal

• services planned to reach the goal

• progress measures

• information about client participation, rights, and conditions of the plan

DRS Financial Participation

• All eligible applicants must complete a financial participation form

• Some services can be provided without regard to financial need

• Other services involve financial participation on the part of the individual/family

Woodrow Wilson Rehabilitation Center (WWRC)

Services provided:• Vocational evaluation and training• Life skills training program• Medical rehabilitation services• Driver education• Counseling and case management

Post-Secondary Education Rehabilitation Transition (PERT)

• Provides high school students with 10-day comprehensive evaluation

• Student attends while still in high school

• Vocational, independent living, leisure and recreational assessments provided

Work Incentives

Community Work Incentive Coordinators (CWICs)

At no cost, support those working SSI or SSDI recipients by helping them to:

• Optimize their Social Security benefits while working

• Understand how to report work, earned income, and other information to Benefit Programs

Housing and Residential Supports

Topics

• Assessing Needed Supports and Financial Resources

• Funding

• Living Options

• Other Considerations

Assessing Needed Supports and Financial

Resources

Assessing an Individual’s Support Needs and Resources

Continuum of Functional Capability

Self-sufficientSupportedindependence

Needs intensivesupports and

services

Continuum of Available Financial Resources

Fully self-supporting

Government funding sources

only

Combination of government

and private funds

+

Funding

Funding Housing or Shelter

Funding options:

• Private pay

• SSI

• Section 8 vouchers

Funding Services or Supports

Examples of funding options:

• Natural supports

• Private pay

• Medicaid waivers

• Auxiliary grants

Living Options

Home or Apartment

Options might include living:

• Independently

• With natural supports

• With paid supports

Group Homes

• Single residence in a community

• Staffed 24 hrs

• Offering treatment & training services

Residential Community or Farmstead

• Supported and supervised

• Provides programs, life skills and job training

• On- and off-site employment

Assisted Living Facility

• Provides or coordinates personal and health care services

• 24-hour supervision and assistance

Intermediate Care Facility or Nursing Homes

• Staffed 24 hours daily

• Provide active treatment and health support

• ICF also provides training

Other Considerations

With Whom Will Your Loved One Reside?

• Family only

• Self-selected friends, roommates, or alone

• Agency/provider-selected roommates

• Mixed or exclusionary resident occupancy of units determined by agency

Other Considerations

• Safety, security, health & wellness• Continuity, stability, familiarity• Minimize sensory overload• Social interaction vs. privacy preferences• Flexible choice & independence• Access to community and supports• Affordability

Life in the Community

Independent Living

Topics

• Transportation

• Medical Management

• Social and Recreational Opportunities

• Banking

• Agencies That May Help

Transportation

TransportationConsiderations:

• Personal or public transportation?

• If personal, student or family member?

• Can student learn to drive?

• Can student use public transportation independently?

DrivingConsiderations:

• Ability to drive, focus, react appropriately

• Ability to understand driving rules

• Instruction

• Accommodations for instruction or vehicle modifications

Transportation

Considerations:

• Family member to transport

• Fellow employee to transport

• Attendant to transport

• Use of family or attendant vehicle

• Reimbursement for gas

Travel Training

Might be provided by:

• Schools - as part of transition goal

• Department of Rehab Services (DRS) - as part of employment goal

• Centers for Independent Living

Public Transportation

Considerations:

• Availability near home, work, recreation• Accessible• Para-transit or deviated schedule availability• Transfers• Costs; understanding money and fees• Travel training

Taxi

Considerations:

• Ability to call taxi• Accessible• Ability to give directions• Costs; understanding money and fees• Travel training• Medicaid transportation

Medical Management

Considerations

Student responsible for care at age 18:

• Student capable of managing own care?

• Power of Attorney or guardianship?

• Transfer from pediatrics to adult care?

Insurance after Age 18

Considerations:

• Ability to remain on parent’s insurance?

• Parents’ insurance allow for dependent care?

• Increase in premiums for individual’s care?

• Other available insurance for individual??

MedicaidConsiderations:

• Eligibility criteria?

• SSI recipients qualify for Medicaid

• Medicaid waiver recipients qualify for Medicaid

• Medicaid redetermination at 18

Social and Recreational Opportunities

Considerations

• Individual’s interests

• Attendant needed

• Transportation

• Costs

Venues to Consider

• Faith communities

• YMCA or gyms

• Parks and Recreation

• Support groups

• Special interest clubs

• Volunteer opportunities

• Day support

Volunteer Opportunities

• Homeless shelters

• Museums

• Food banks

• Parks and recreation

• AmeriCorps

• American Red Cross

• Habitat for Humanity

• SPCA

• Rescue squad

• YMCA

• Places of worship

• Library

Banking

Considerations• Ability to understand money, budget,

banking

• Bank account in student’s name

• Co-signer on account, if needed

• SSI Representative Designee, if needed

• Debit card

• Automatic withdrawals for monthly bills

Agencies That May Help

• Centers for Independent Living

• Community Services Boards

Centers for

Independent Living

(CILs)

Centers for Independent Living (CILS)

• Serve people with all disabilities

• Serve people across life span

• Provide information to community members

• No fee for service

CILs’ Core Services

• Independent living skills training

• Advocacy

• Peer counseling

• Information and referral

• Other services as needed by community

Community

Services Boards

Community Services Boards

Point of entry into the publicly-funded system of services for:

• Mental health• Intellectual disability• Substance abuse

Community Services Board

• 40 CSBs provide some services in every city and county in Virginia

• Serve 134 localities in all

Community Services Boards

Offer combinations of six core services:

• Emergency services (mandated)• Local inpatient services• Outpatient and case management services• Day support services• Residential services• Prevention and early intervention services