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

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 http://www.youtube.com/watch?v=RA7sX_FYSCY 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

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

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?

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

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

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.

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.

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 http://westcityfilms.com/raising_renee.html Look Closely at the Paintings!! War Story– Parents die and sister cannot adjust, even though followed all my instructions.

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)

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

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) http://www2.ed.gov/about/offices/list/osers/rsa/programs.html 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

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

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

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

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

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

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)

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

Post-Secondary School Education Many of Us Learned to Live Independently in College One Example: Beyond Academics Living http://vimeo.com/25406367 Learning http://vimeo.com/27772546

Post-Secondary School Education Many of Us Learned to Live Independently in College One Example: Beyond Academics Living http://vimeo.com/25406367 Learning http://vimeo.com/27772546

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

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