Texas School for the Blind and Visually Impaired
Outreach Programs
www.tsbvi.edu | 512-454-8631| 1100 W. 45th St. | Austin, TX 78756
Key Things Professionals Should Share with Parents about Transition to Adulthood
February 13, 2014
Presented by
Rosemary Alexander, PhD
Texas Parent to Parent, Transition Coordinator
Developed for
Texas School for the Blind & Visually Impaired Outreach Programs
[Type text]
Support parents through transition
Parents' emotions run high through the years leading up to graduation. School staff can provide support by:
Acknowledging the grief and anxiety of losing school supports and services
Having faith in a family's process
Support parents by...
Realizing that every family has its own pace for letting go
Honoring the variety of parenting styles and visions for the future
Helping families prioritize
Never saying never—keep hope alive
Support parents by...
Talking positively about the student/future
Using positive planning sessions
Respecting “unrealistic” dreams by regarding them as an opening to talk about an area of interest or passion
Helping parents to get organized and keep records
Use school-based planning tools
Invite parents and students to inventory the present and imagine the future
Allow time for real exploration and brain-storming
Host in a comfortable setting
Be sure families invite relevant people from outside school
Help parents move to community-based planning tools
Person-centered planning provides the focus person with
A way to state goals and carry them out
A group that cares about the focus person to assist with goals and steps
An inventory of the present and a way to drive change for the future
Essential Questions
For the focus person and the group to answer:
1. What do you like and dislike?
2. What are you good at? Talents? Strengths?
3. In what areas do you need support?
Now name goals based on the answers and brain storm ideas to carry out 1 goal.
Learn more!
Institute for Person-Centered Practices: http://person-centered-practices.org/ at A&M
Microboard Collaboration at Arc of Texas: http://www.thearcoftexas.org/site/PageServer?pagename=arc_home (create a PATH)
Education Service Centers
txp2p.org, Pathways to Adulthood, Planning for the Future
www.pacer.org/tatra/resources/personal.asp
Use public school for + transition
Be sure that parents understand:
· IDEA mandates transition services
· Transition must be addressed in IEP by age 14
· Goals should be based on student's interests, needs and preferences
Broaden IEP Goals to include
· Social/recreational skills
· Vocational skills, financial skills
· Daily living skills (can include self-monitoring, study skills, communicating with teachers, etc)
· Continue promising academic goals
· Transportation
Be sure families know:
· Students must attend IEP meetings and become engaged in the process
· Planning process is available (not ARD)
· District's transition services and options, key transition staff
· When their child will graduate (18-22) and under what graduation plan
· Student going to 4-year schools must enter on his or her own merit
· Families can visit campus disability offices to ask about accommodations available on campus
· Plan by 9th grade what credits and testing will be required for college eligibility
· Learn about 2-year degrees, community college programs, technical schools, etc
· Student should be ready to talk about the future with the IEP team—be creative about how to share interests and preferences
· Student should leave school with best, up-to-date evaluation
Learn more!
Great websites on IDEA/transition and best practices for families:
http://www.wrightslaw.com/info/trans.index.htm
http://www.texasprojectfirst.org/TransitionIEP.html
Know about the 4 big state agencies
TxDADS—Dept of Aging and Disability Services www.dads.state.tx.us/ provides long term services and supports for people with disabilities
TxDARS—Dept of Assistive and Rehabilitative Services www.dars.state.tx.us/ administers programs for people with disabilities and children who have developmental delay: deaf & blind, vocation rehab, ECI, and more
TxDSHS—Dept of State Health Services www.dshs.state.tx.us/ improves health and well being in TX, includes CSHCN (Children with Special Health Care Needs)
TxDFPS—Dept Family and Protective Services www.dshs.state.tx.us/ protects the unprotected: children, elderly and people with disabilities
And the boss agency
Tx HHSC—Health and Human Services Commission www.hhsc.state.tx.us/
State agency which seeks to provide the leadership and innovation needed to achieve an efficient and effective health and human services system for Texans.
Oversees Medicaid and SNAP
Learn about Medicaid Waivers
· Our most progressive use of Medicaid state and federal dollars
· Medicaid Waiver Programs assist people of all ages with disabilities to live in the community instead of an institution.
· Person or family has choice and control over how to use services/budget
Medicaid Waivers
· If your student is not on the interest lists, call now even if you aren't sure she will qualify:
· CLASS and MDCP—call 877- 438-5658
· HCS—call your local I/DD center; to find your local center, go to www.dads.state.tx.us/services/contact.cfm
· Prepare to wait 10 years!
Families need to know about Waivers
· If person is on the wait list, keep contact info up to date and respond to agency queries; know number on the list
· Back-doors to Waivers: for very medically fragile children and for dire circumstances
· Ask about Texas Home Living Waiver at your local I/DD center
· STAR+Plus, Medicaid managed care, now has waiver services also, available at age 21
Learn more!
· http://communitynowfreedom.org/ for advocacy viewpoint
· www.txp2p.org/, Pathways, Services and Supports
· www.dads.state.tx.us/providers/waiver_comparisons/index.html go to TX Long-term Services and Supports Waiver Programs and also note list on left-hand side for all waivers
· www.txp2p.org/ has a Medicaid listserve
Other DADS resources
TX Dept of Aging and Disability Services
To find your local I/DD local authority, go to: www.dads.state.tx.us/services/contact.cfm
Help for Texans through DADS:
www.dads.state.tx.us/services/listofservices.html
Be ready to apply for SSI
Supplemental Security Income for people age 18 and older
· Based on low income and disability
· Based on individual’s resources, not family's
· Must have limited income ($718 per month)
· Must have limited resources (max of $2000 in child's name in ready assets)
SSI
· Must have a disability—a physical or mental condition that is so severe that is keeps him or her from working substantially for at least 12 months
· Provides cash per month ($470-$710/month)
· With SSI Medicaid comes automatically
Advice on SSI
· Set up a separate bank account for automatic deposit (keep separate from family accounts)
· To get the higher amount, say that child wishes to pay his “fair share” on household expenses
· Can save over $2000 via a PASS Plan to pay for items or services needed to achieve a specific work goal. http://www.ssa.gov/disabilityresearch/wi/pass.htm
To lean more and to apply for SSI
· Online at yourtexasbenefits.com
· Meet with HHSC staff person at an office near you: same web site, Find an Office
· Call 211
· SS toll free # 800-772-1213
· www.ssa.gov/disability/
· For more information, go to txp2p.org, Pathways, Services and Supports
Be ready for medical transition
· Health care professionals may not share information with parent after child is 18
· Start by age 14 to prepare a child to assume health care responsibilities
· Talk to pediatric health providers before age 18 about adult health services
Medical insurance for adults
· Combine private insurance with Medicaid-->HIPP (Health Insurance Premium Payment) may pay your premium
· STAR+Plus is a TX Medicaid managed care program for people who have disabilities; offers Medicaid health-care and long-term services and support www.hhsc.state.tx.us/starplus/overview.shtml
Medical insurance for adults
Medicaid Buy-In—helps people with disabilities who work http://www.hhsc.state.tx.us/mbi.html
Learn about your work-place medical insurance policy: child may stay on till age 26; petition within window
Help parents to be ready to decide about guardianship
· At age 18, society assumes a person can give informed consent and make legal/financial decisions
· A parent can petition probate court to become legal guardian at age 18 or after
· Empowers guardian to make decisions for an “incapacitated person”
Guardianship
Can get limited guardianship which spells out in what areas guardians do/do not have legal decision making power
Investigate finding the right lawyer and what the costs will be
Give student opportunities to practice making his/her own decisions
Alternatives to guardianship
If a parent is unsure about a child's need for a guardian, worried about the cost or has philosophical reservations, may want to explore alternatives to guardianship.
For example, power of attorney for financial and medical decisions
To learn more
· texasguardianship.org/guardianship-information/guardianship-basics/guardianship-process-2/
· http://texasprojectfirst.org/Guardianship.html
· http://www.disabilityrightstx.org/resources/community-living
Get creative and committed to employment
Work = participating in the community
Work = making a contribution
Work includes:
Volunteering
Working part-time to full-time
Entrepreneurship or self-employment
Path to employment
Vocational training in public school:
Vocational classes
On-campus experience
Off-campus experience
Job coaching/VAC (Vocational Adjustment Counselor)
Supports for work after graduation
Vocational Rehabilitation Program through DARS* helps people with disabilities prepare for, find and keep jobs.
Work related services include counseling, training, medical treatment, assistive devices, job placement assistance, and other services.
*DARS=Dept of Assistive and Rehabilitative Services
DARS
Vocational Rehabilitative Services provide short-term, not long-term supports
Special education teacher can provide link with DARS
DARS can pay for services, equipment, classes, etc. that enable a person to work
(800) 628-5115
http://www.dars.state.tx.us/drs/vr.shtml
Develop a creative approach to work
Look for the intersection of a youth's interests with talents and gifts
What motivates him? What does she get excited about?
What kind of environment does he like? Indoors or outdoors, quiet or active?
What supports does she need to work?
What service can he provide that's in demand?
Find a supportive work environment
Look for a place where people care for others, have heart for their work
Look for a place that is already diverse
Consider advantages of big companies and small places and of self-employment
Examples: seminaries, non-profit, schools, churches, big state agencies required to employ people with disabilities
Don't forget the basics
Transportation
Getting along with peers
Being ready to handle the unexpected
Being able to take criticism or suggestions
Dressing appropriately
Being on-time and coming everyday
Doing what you promised to do
Learn more!
https://www.disabilityrightstx.org/resources
http://nichcy.org/publications/topics-az NOTE: This website will be pulled down on 9/14
www.pacer.org/publications/ncsetbriefs.asp
http://www.ncset.org/
www.thearcoftexas.org --> Services in Texas
http://www.transitionintexas.org
Living options post-graduation
Traditionally students with more severe disabilities would move to a group home:
Old-style ICFMR group homes, Intermediate Care Facility (6 or more), still exist
HCS Group Homes (4 residents max), HCS=Home and Community-based Services, a Medicaid Waiver, waiting list
Privately funded communities
Examples--
· Brookwood Community near Houston
· Down Home Ranch near Austin
· Marbridge Ranch near Austin
Many parents now looking for more choice/control
Greater control over the environment => higher quality environment
Keep the number of people with disabilities low (1-3 is ideal)
If needed, build in continuity of live-in support
Some Waiver-based options
Family-run HCS group home (HCS only waiver that provides a group home system)
Foster home via HCS
CLASS program to provide supports in person's home or live with support person
Family Consortium
Small group of parents pool resources to manage a home for their children with more choice and control over their lives
Group must be willing to work closely together, manage support services together
May buy or rent a house/condo/apartment
www.leapinfo.org/, go to Programs and Services, Living with Technology
Shared Residence
Roommate model
Several people choose to live together in a house or apartment or near-by apartments
House parent (if needed) gets free room and board
Other care providers come and go as needed
Learn more!
HOYO—Home of Your Own http://centraltx.easterseals.com/site/PageServer?pagename=TXCA_CHShoyo
Habitat for Humanity search for org in your city
Section 8 Housing search for info in your city
Txp2p.org, Pathways to Adulthood, Life After Graduation
Commit to creating social networks
Concept of personal networks comes from PLAN, a family organization in Vancouver (plan.ca)
Networks build a circle of support around a person at risk of isolation
Networks multiple a family's resources, ideas, connections and energy
Networks build intentional community
What do networks look like?
Networks can be:
Big (20 or more) or small (2-3 members)
Focused on a single project (getting a job, moving into a new home)
Or providing supports for the long haul, even after parents are no longer around
Loosely organized or set up as a Microboard through The Arc of Texas
Who joins networks?
Immediate family, especially popular with siblings
Extended family
Neighbors, family friends, church members
People who have worked with the focus person (school, attendants, therapists, etc)
Peers
People who want to support a person or family but have never known how to help
What can networks do?
Provide social opportunities (online calendar?)
Plan for the future
Help carry out plans
Help make decisions
Help find resources, make connections
Interview attendants, check on care, monitor quality of care
Have fun!
What are the first steps?
Open up your life to more people
Be open and honest with family members
Get over the idea that you have to do it all or that you are the only one who can care for your child
Be willing to share your fears and hopes
Gather the courage to invite a few people to a first meeting
Learn more!
PLAN book that helps you get started:
A Good Life, by Al Etmanski Available at http://institute.plan.ca/ and click on Courses/Products or Amazon.com
Arc of Texas Microboard Collaboration www.thearcoftexas.org and look at the very bottom line of the home page
www.txp2p.org/, Pathways, Life After Graduation
For Families: Get started now!
Get yourself ready
Reach out to others, build networks
Start thinking long term
Take inventory of resources
Initiate a planning session
Work to change your community
Focus on the gifts of our children
Contact Us
Rosemary Alexander, PhD
Texas Parent to Parent, Transition Coordinator
Thank you for joining us!
NOTES
Texas School for the Blind & Visually Impaired
Outreach Programs
Figure 5: TSBVI logo.
Figure 6: IDEAs that Work logo and disclaimer.
Key Things Professionals Should Share with Parents about Transition to Adulthood, by R. Alexander, PhD, 2014 11