1. The 2012 Special Needs Alliance Boot Camp
Housing Options and Transition Challenges for Persons with Disabilities
The 2012 Special Needs Alliance Boot Camp

2. Why Care about Housing & Supports?
Most People with Disabilities Want to Maintain or Attain as Much Independence as Possible
Developing Independent Living Skills is Critical. What Happens When Mom and Dad are Not There?
History: Willowbrook State School – 40 years ago
Unforgotten: Twenty-Five Years after Willowbrook
Available on Hulu and Amazon
Unforgotten: Twenty-Five Years after Willowbrook (Available from Amazon for Instant Viewing) at 10 minutes

3. My Goals
Encourage you to become the local expert on residential options and an advocate for persons with disabilities
Encourage you to protect the rights of clients with disabilities at home & in residential facilities

4. Questions to Ask Where will your child live?
Now
Near Future – transition from childhood into adulthood
Adulthood
Old Age
How will your child find the supports needed to live in the optimal setting?

5. Housing Transitions Child to Adult Loss of Caregiver Crisis
Behavioral Crisis
Financial Crisis
Institution to HCBS Waiver Program
Old Age/Dementia

6. Supports to Live Independently
How will child afford to live there and get care?
Own financial resources
Ability to work
Payback Special Needs Trust
CLASS Act????
Family financial and manpower resources
Caregivers
Family
Community Non-Profit, Rep Payee
Access to Home
Family Purchased or Rented
Agency Provided
Partnership of Family and Agency
Community resources
Waiver programs
Transitions through Voc Rehab and Money Follows the Person

7. Staying Home with Parents
Most Popular Option
Who Will Be There When Crisis Strikes?
Supplemental Needs Trust
Guardianship vs Powers of Attorney
Letter of Intent
Case Manager before Crisis
Move to New Caregiver before Crisis
War Story– Parents die and sister cannot adjust, even though followed all my instructions.

8. Staying Home with Parents
Encourage Independence
Vocational activities
Social activities
A life apart from mom and dad
Why?
Dignity
One day parents will not be there
War Story– Parents die and sister cannot adjust, even though followed all my instructions.

9. Staying Home with Parents
The Myth: My Daughter Will Take Care of Her Sister & Step Into My Shoes
Major Commitment
Will sibling’s family be able to adjust?
Will the child with a disability adjust?
Raising Renee
Look Closely at the Paintings!!
War Story– Parents die and sister cannot adjust, even though followed all my instructions.

10. Prepare for No Parents Financing Issues: Access to Medicaid & Medicare
Protect the DAC Passalong
Access Community Waivers
Access to an Appropriate Home
Section 8 or other subsidized options
Parents’ Home or another
Creative Idea: Gift to Non-Profit for Residential Care, Parent Team Projects (Marriam Place)

11. Finding Supports to Live Independently
Learn what services are available in your community for your families
UCP, ARC, NAMI, State Medicaid Home & Community-Based Care
Centers for Independent Living (CILs)
Human Rights Committees of ICF-MR or other Residences
Bailey’s Plan for becoming an expert
Become active 2 to 3 of the above non-profits, committee or board level
Serve on a Human Rights Committee

12. Independent Living Funded by the Department of Education CILs
Rehabilitation Services Administration
Centers for Independent Living (CILs)
Assistive Technology Programs (ATPs)
Client Assistance Programs (CAPs)
State Independent Living Councils (SILCs)
CILs
Non-profits driven by consumers for all disabilities
4 Core Areas of Service:
Peer Support
Advocacy
Independent Living Skills
Information & Referral

13. Find a More Appropriate Home
Therapeutic Foster Parent Programs
Foster Parent Paid
Income & Resources Not Deemed
One on One Living/Alternative Family Living/Adult Foster Care
1 to 3 residents
Mental health funding
Looks like any home or apartment

14. More Restrictive Housing Options
Mental Health/DD-Funded, Adult or Children
Licensed Residential Care or Group Homes
Private ICF-MRs or State Developmental Centers
State Mental Hospitals (IMDs)
Private Medicaid or Waiver Funded
Independent Living or Congregate Living
Board and Care/Rest Home
Assisted Living Facilities
Nursing Facilities

15. Nursing Facility Issues
PASARR (Preadmission Screen & Resident Review)
Anyone suspected of having an ID, DD or Mental Illness
To ensure they have access to services through mental health system
MDS 3.0
Now includes questions concerning where resident prefers to lives (Section Q)
Answering yes to wanting to live somewhere else should trigger consultation on community-based services (MFP)
October 1, 2011

16. Money Follows the Person
Demonstration Program in over 33 States to transition people from facilities to home
Who? Persons with physical disabilities, intellectual/ developmental disabilities or mental illness in qualified facilities for 3 months (don’t count Medicare days) & on Medicaid
Qualified Facilities? Nursing Facilities, ICF-MRs, Hospitals, not ALFs
Qualified Residence?
Home owned or rented by participant or family
Apartment with individual lease (not independent living or ALF)
Community-based setting up to 4 unrelated persons

17. Money Follows the Person
MFP Participant
Priority access to HCBS Waiver (no waiting list)
Flexible funds to make transition
Utility deposits
Modifications to home
Computer
State
Feds pay larger share of cost
Savings must be set aside and used for “rebalancing”
Shows commitment to Olmstead

18. MFP Primary Purposes Transition People from Facilities Systems Change
Promote Home & Community-Based Services
Eliminate Barriers (including Medicaid policy)
Proving Ground (for higher quality services)

19. Post-Secondary School Education
Higher Education Opportunity Act encourages PSE Programs for ID
Participants can qualify for student aid, loans, grants and federally-funded campus jobs
Educational Institution’s “report card” not impacted by PSE Program

20. Post-Secondary School Education
Many of Us Learned to Live Independently in College
One Example: Beyond Academics
Living
Learning

21. Post-Secondary School Education
Many of Us Learned to Live Independently in College
One Example: Beyond Academics
Living
Learning

22. Housing Purchase Issues
Any Home May One Day Become a Residential Care Facility
Purchasing a Home at Time of a PI Settlement
Working with a universal design architect

23. Dedication to Ed Roberts, Father of Independent Living
Ron Mace, Father of Universal Design