Kerry Mahoney “Tackling problems, proposing solutions” The Arc of Massachusetts

1. Ready to Launch! Navigating the Housing Maze:An Overview of Housing and Residential SupportsTransition Conference 2014 Kerry Mahoney “Tackling problems, proposing solutions” The Arc of Massachusetts

3. Housing and Building Independence • Letting Go • Building Independence • Importance of Planning • Options • Resources

4. 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

5. 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

6. 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.

7. Letting GO

8. “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

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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

15. 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!!

16. 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

17. 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

18. 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

19. FEDERAL and STATE BENEFITS PROGRAMS: • MEDICAID/MASS HEALTH • SSI • SSDI • FOOD STAMPS • MEDICARE • SECTION 8 HOUSING VOUCHERS • ADULT FAMILY CARE • PERSONAL CARE ASISTANCE

20. LET’S TALK ABOUT HOUSING OPTIONS!

21. 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

22. HOUSING OPTIONS • 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-homeservices provided through health care agency, DDS, roommate, or community • and family supports

23. HOUSING OPTIONS • 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. • Home Sharing: 2 or more unrelated persons sharing housing and expenses.

24. 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

25. 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

26. “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

27. Housing Resources • Moving Out: A Family Guide to Residential Planning for Adults with Disabilities by DafnaKrouk-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!