Ready to Launch!
Navigating the Housing Maze:
An Overview of Housing and
Residential Supports
Transition Conference 2014
Kerry Mahoney
“Tackling problems, proposing solutions”
The Arc of Massachusetts
Housing and Building Independence
• Letting Go
• Building Independence
• Importance of Planning
• Options
• Resources
WISH LIST FOR OUR CHILDREN
• A good place to live
• Reliable and compassionate
caretakers
• Adequate private financial
resources
• Adequate government
resources
• Good medical and dental care
• Friends
• A healthy diet
You Are Not Alone
• Over 76% of people with developmental
disabilities live at home with their families.
• 1.9 million people with developmental
disabilities are estimated to live at home or
with a family caregiver.
• Nationwide there are an estimated 475,000
older caregivers of children and adults with
intellectual or developmental disabilities.
• Some 25% of these caregivers are age 60
or older.
• Waiting list- 80,000 nation wide
The average age of an adult
with a developmental
disability living with parents
age 60 and older is 38 years.
Child with an intellectual
disability today – life
expectancy of 66.
Fewer than 50% of these individuals have a
viable plan for the future after their parents die.
Letting GO
“LETTING GO WAS THE HARDEST
THING I EVER DID”
• WHEN SHOULD I BEGIN
TO PLAN
• START EARLY
• HAVE CONTROL OVER
ULTIMATE SETTING
• RESEARCH FUNDING,
PROGRAM MODELS,
• BE OPEN TO LEARNING
• ALLOW YOU TO PLAN
FOR FINANCIAL
RESOURCES
• TIME TO ADJUST TO
YOUR NEW LIFE STYLE
HOW WILL YOU KNOW WHEN YOU
AND YOUR CHILD ARE READY?
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ANSWERS VARY
TRUST INSTINCTS
CONNECT WITH OTHER FAMILIES
CONNECT WITH LOCAL ORGANIZATIONS
ATTEND HOUSING CONFERENCES
Where Do I Start?
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OFFER OPPORTUNITIES FOR SOCIAL EXPERIENCES IN WHICH YOU ARE NOT
PRESENT
OBTAIN AN ASSESSMENT FROM AN AGENCY OR SPECIALIST THAT DEALS WITH
ADULT RESIDENTIAL SERVICES (SAFETY SKILLS, SELF CARE SKILLS, EMOTIONAL
NEEDS, LEARNING ABILITY)
INCLUDE RESIDENTIAL GOALS IN THE TRANSITION PLAN
HELP YOUR CHILD GAIN SKILLS
IF YOUR CHILD IS IN A RESIDENTIAL PROGRAM, ADVOCATE FOR ADULT
RESIDENTIAL SERVICES
HAVE YOUR SCHOOL ADVOCATE FOR AN APPROPRIATE RESIDENTIAL
PLACEMENT
BEGIN TO DISCUSS WITH OTHER FAMILY MEMBERS
TAKE ADVANTAGE OF GOVERNMENT BENEFITS
APPLY FOR STATE AND FEDERAL HOUSING PROGRAMS
BEGIN TO VISIT RESIDENTIAL PROGRAMS
JOIN A GROUP OF FAMILIES WHO ARE THINKING ABOUT ESTABLISHING
RESIDENTIAL SERVICES
STEPS FOR INDEPENDENCE
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TEACH BASIC HOUSEHOLD CHORES
TEACH PERSONAL CARE TO BE AS INDEPENDENT AS POSSIBLE
HAVE YOUR CHILD SET AN ALARM AND WAKE UP ON THEIR OWN
BUY BASIC INGREDIENTS FOR MEALS
LEAVE YOUR CHILD WITH CAREGIVERS AND GO AWAY
BEGIN A TRAVEL PROGRAM
HELP YOUR CHILD MAKE GOOD DECISIONS – SELF DETERMINATION
Skills to Teach- What is the Potential
for Learning?
Self Care Skills
Personal Care
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Being left alone- strangers, phone calls
Laundry
Housekeeping
Planning meals, preparing meals and
cleaning up
Safely use appliances
Shopping
Evacuate in case of emergency
Manage money and budget
Independence in the community
First aid
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Bathing
Grooming
Getting dressed and changing clothes
Exercise
Eating
Toileting
Transportation to medical appointments
and running errands
Mobility needs-transfers, walking
Medication management
KNOW YOUR PRIORITIES
RANK THESE 14 GOALS:
• TO BE INDEPENDENT
• TO HAVE FRIENDS
• TO BE SAFE
• TO GET MARRIED OR HAVE A SIGNIFICANT OTHER
• TO LIVE IN A PLACE THAT IS CLEAN
• TO LEARN NEW ACADEMIC SKILLS OR MAINTAIN PRESENT ONES
• TO HAVE A LARGE, BEAUTIFULLY DECORATED ROOM
• TO HAVE WITH FAMILY EACH DAY
• TO BE ACTIVE AND INVOLVED IN SOCIAL/RECREATIONAL ACTIVITIES
• TO HAVE STAFF WHO ARE OF SAME GENDER
• TO HAVE ROOMMATES WITH SIMILAR INTERESTS AND/OR ABILITY LEVELS
• TO BE WITH PEOPLE WHO HAVE NO BEHAVIORAL PROBLEMS
• TO PARTICIPATE IN RELIGION
• TO BE WELL DRESSED AT ALL TIMES
Reasons to Plan
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Change is inevitable for all of us
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We have more control of the outcomes
now and can design our own system
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We gain peace of mind
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We can make changes gradually,
easing the transition for our son or daughter
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It will be less of a burden to future caregivers because we
can help them now
Planning Pros and Cons
Why Plan?
• Resources may diminish
with time
• Decisions made in crisis may
result in taking what is
available, not what is best
• We would like the same
freedom from caregiving
that older parents enjoy
• Must find a replacement for
yourself
• Child may want to live
elsewhere
Reasons Not to Plan
• We do not want to think
about our illness or death
• We are not sure that the
services will meet our
desires
• We assume that others will
provide, if the need arises
• My son or daughter
contributes to the home
• It is too scary to think
about!!
ROLES OF SIBLINGS:
• Guardian
• Advocate – write letters, make calls, go to meetings
• Visitor – visit and get to know others in brother’s or sister’s life
• Friend – connect to family and community
• Trustee
• Caretaker – providing care
• Representative payee
• Note- Parents don’t often involve their other children in
talking about the present and future needs of the child with a
disability
How Much Will It Cost?
• Factors to consider
– Staff and Personal Assistance
– Housing which includes utilities, taxes,
maintenance
– Transportation
– Food and House Supplies
– Staff Training
– Management
– Personal Expenses
FINANCIAL CONSIDERATIONS:
How is all this going to
to be funded?
What public benefits exist:
SSI, paycheck,
waivers, SSDI.
Other:
Special needs trusts
Family support
FEDERAL and STATE BENEFITS
PROGRAMS:
• MEDICAID/MASS HEALTH
• SSI
• SSDI
• FOOD STAMPS
• MEDICARE
• SECTION 8 HOUSING VOUCHERS
• ADULT FAMILY CARE
• PERSONAL CARE ASISTANCE
LET’S TALK ABOUT HOUSING
OPTIONS!
MODELS OF RESIDENTIAL
ARRANGEMENTS
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GROUP HOMES
AVERAGE GROUP RESIDENCE 4-5 PEOPLE
24 HOUR SUPPORTS – STAFFING
CONDO – RESIDENTS OWN LIVING SPACE – SHARE COMMON SPACE
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SUPERVISED INDEPENDENT LIVING
SUPPORT FROM AN OUTSIDE PERSON.
1-2 PEOPLE LIVING TOGETHER
APARTMENT, HOUSE, CONDO,
CAN MANAGE WITHOUT 24 HOUR CARE
SHARED LIVING
LIVING WITH AN EXISTING FAMILY OR INDIVIDUAL
ADDITIONAL SUPPORTS & STAFF CAN SUPPLEMENT
CAREGIVER PAID A STIPEND
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HOUSING OPTIONS
1.Home Ownership: Gives the
individual most control over living
arrangement
•Can be financed with family
savings, investments, firsttime home ownership
programs, or special needs
trusts
•In-home services provided
through health care agency,
DDS, roommate, or community
and family supports
HOUSING OPTIONS
2. Renting or Leasing: Most communities
have market rent or subsidized
apartments available.
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Information can be obtained
from state agencies, housing
organizations, human service agencies,
friends, relatives, landlords, and realtors.
Section 8 Housing Voucher.
3. Home Sharing: 2 or more unrelated
persons sharing housing and expenses.
HOUSING OPTIONS
4. Collaboration with local housing authority
and provider agency
5. In-law apartment
6. Purchase of a condo
7. Become a Section 8 landlord
8. Purchase a home, partner with provider
agency, rent units
HOUSING OPTIONS
9. Purchase multi-family home, rent units
10. Rent in federal-owned 55+ properties
11. Join other families to purchase a house,
provider agency, housing authority
12. Find an AFC provider/shared living
“The worst thing one can do is not to try, to
have a dream and not go for it, to spend the
years of our lives in our quiet cocoon
fluttering and forever wondering if something
could have been – never, never knowing.”
-Alinda Arthur Nelson
Housing Resources
• Moving Out: A Family Guide to Residential
Planning for Adults with Disabilities by Dafna
Krouk-Gordon and Barbara Jackins
• Legal Planning for Special Needs in
Massachusetts by Barbara Jackins
• MFOFC Housing Connections:
http://www.mfofc.org/survey/
• Section 8 Housing Choice Vouchers:
section8listmass.org/
Special thanks to Pat Pakos for sharing her
knowledge and expertise!