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

Fewer than 50% of these individuals have a viable plan for the future after their parents die. 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.

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? ANSWERS VARY TRUST INSTINCTS CONNECT WITH OTHER FAMILIES CONNECT WITH LOCAL ORGANIZATIONS ATTEND HOUSING CONFERENCES

Where Do I Start? 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 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 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 Personal Care 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 Change is inevitable for all of us We have more control of the outcomes now and can design our own system We gain peace of mind We can make changes gradually, easing the transition for our son or daughter 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 GROUP HOMES AVERAGE GROUP RESIDENCE 4-5 PEOPLE 24 HOUR SUPPORTS – STAFFING CONDO – RESIDENTS OWN LIVING SPACE – SHARE COMMON SPACE 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

HOUSING OPTIONS 1.Home Ownership: Gives the individual most control over living arrangement Can be financed with family savings, investments, first- time 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. 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: Section 8 Housing Choice Vouchers: section8listmass.org/ Special thanks to Pat Pakos for sharing her knowledge and expertise!