Planning for the Future of a Family Member Who has a Disability

1. Planning for the Future of a Family Member Who has a Disability Bernard M. Raiche, Ed.D., LCSw-C Executive Director Plan of Maryland-D.C., Inc. 604 S. Frederick ave., Suite 411 Gaithersburg, md 20877 Tel: 301-740-8444 X 222 Fax: 301-740-8455 braiche@planofmd-dc.org www.planofmd-dc.org

2. PLAN of Maryland – D.C., Inc. • Family Founded • Family Directed • Board of Directors • Personal Plan Review Committee • Trust Committee

3. PLAN’s Services Include • Case Management • Budgeting / Bill Payment • Trust Management • Cognitive Enhancement Therapy • Housing

4. Preparing so others can carry on your work

5. What direct support are you providing Emotional support – Social contacts Lodging (and keeping it clean) Food Transportation Applying for benefits / Maintaining eligibility Spending cash Problem solving Resolving crisis situations Make a list – Expand it as you recognize additional things that you are doing

6. What support are you facilitating? • Finding doctors/therapists – Making appointments • Finding resources (housing – activities) • Helping providers communicate with each other • Make a list – Add to it as you recognize more things that you are facilitating

7. Who is going to provide that support when you are no longer able to? • Siblings • Are they willing to step into that role • Will their brother or sister be receptive to receiving help from them • What effect with it have on sibling relationships • Other family members • Family friends • Social workers affiliated with programs • Professional case managers • PLAN of Maryland-D.C.

8. Planning for the future -First Step • Identify the services and support your family member needs now and / or will need in the future • Identify who provides those services or that support now • Identify who will provide those services or that support later, when you or other key caretakers are no longer able to do so.

9. Get a Commitment to Help • Talk to all those on your helper list and ask them to commit to helping. • Make sure they understand what you are asking them to do. • Do not assume that they are willing or able to help.

10. How PLAN Can Help WithCase Management • PLAN can provide case management services, and can coordinate and monitor other services provided. • All of our case managers are licensed social workers or licensed professional counselors • PLAN can help with budgeting and bill payment • PLAN can supplement the work of others who have agreed to step in and help, and/or can be in place as a successor.

11. Planning for Financial Security • Key Elements • Supplemental Security Income (SSI) and/or SSDI • Medical Assistance or Medicare • Trusts

12. Two Types of Special Needs Trusts • Self Settled Trusts • (d)(4)(A) • (d)(4)(C) • Third Party Trusts

13. Self-Settled Trusts – (d)(4)(A) • First Party – “Self Settled” trusts – 42 USC & 1396p“(d)(4)(a)” Trusts • Funded with the assets of the individual with a disability who is under age 65 • Exempt if created by a parent, guardian, or a court • Must reimburse the State for Medical Assistance costs • Amounts in excess of the state’s reimbursement can be passed on to contingent beneficiaries

14. Self Settled Trust – (d)(4)(C) • 42 U.S.C. & 1396p(d)(4)(C) • Established and managed by a nonprofit agency • Pooled accounts • Accounts established by individual, parents, grandparents, guardian or court • State may be reimbursed, or trust may retain balance after death of beneficiary

15. Special Needs TrustsThird Party Trusts • “(c)(2)(B)(iii or iv) • Established by parent or other individual for the benefit of a individual with a disability who is under 65 • For the sole benefit of the disabled person • Must be spent down on an actuarially sound basis • Amounts left in the trust at the death of the primary beneficiary can be passed on to a contingent beneficiary.

16. Benefit of Special Needs Trusts • Allow family to provide financial resources for an individual with a disability without making that individual ineligible for means tested government benefits such as SSI and Medical Assistance. • Allow an individual with a disability who comes into assets (such as an SSI lump sum payment, unplanned inheritance, or a litigation award) to preserve those assets without becoming ineligible for means tested government benefits.

17. Who can create a Special Needs Trust • Attorney who has the specialized knowledge regarding special needs trusts • Joining an existing First Party or Third Party discretionary trust

18. Implementing Your Plan ThroughCreating A Trust • Selecting a Trustee • Family member or trusted friend • Make sure Trustee has required skills • Knowledge of Trust regulations and procedures • Knowledge of SSI / Medical Assistance / Other means tested benefits • Understanding of the unique needs of the beneficiary • Resources to provide the care needed • Make sure Trustee is willing to serve • Attorney – Make sure the attorney has • Understands the unique needs of the beneficiary • Resources to provide the care beyond financial management • Institutional Trustee

19. Things to Consider When Selecting a Non-Family Member Trustee • Minimum size of the trust they will accept • Fees for trustee services • Understanding and ability to work with the individual who has a disability • Flexibility in responding to emergency situations • Ability to provide or coordinate the services which will be needed.

20. Funding the Trust • A trust can funded at the time it is created, or it can be created prior to the time when it will be funded • Trusts generally become irrevocable at the time when they are funded. • Future funding of a trust can be provided as a provision in a will • Future funding can be provided through a life insurance policy • Future funding (with some limitations) can be provided through retirement benefits

21. PLAN of Maryland-D.C., Inc. as an Institutional Trustee • PLAN operates a third party discretionary trust that families can join • PLAN may be willing to serve as Trustee of a pre-existing third party trust • Under some circumstances PLAN will accept the role of trustee for (d)(4)(A) self settled trusts • The terms of the trust must be satisfactory to the PLAN Trust Committee.

22. PLAN of Maryland-D.C., Inc. Master Discretionary Trust • Families can join PLAN’s existing Master Discretionary Trust • Trustees are family members who understand the importance of the service they perform • Trust office is operated by people who understand and are committed to helping individuals with disabilities • No predetermined minimum corpus required • No minimum trustee fee • Coordinated services • Communication and planning between the trust office and case management services • Coordination between the trust office and bill payment services • Flexibility to respond to beneficiaries needs • Flexibility to respond to crisis

23. How Do I Register for PLAN Services • Any PLAN Services • Become a member of PLAN – Annual Membership $130 • Call Bernie Raiche at 301-740-8444 x 222 • Case Management / Budget – Financial Management • Sign a contract for Case Management Services • Complete PLAN’s Clinical Information Form • Complete other required forms (HIPAA, etc.) • Participate in the completion of the Personal Plan of Care • Work with Case Manager to determine which specific services you would like PLAN to perform

24. How do I Register for PLAN Services – Cont. • Trust Services • Complete steps for Case Management services • All trust clients receive at least minimal case management services • Complete Trust Application • Provide all relevant documents • Meet with PLAN’s Trust Committee • Communicate your concerns and desires regarding how the trust is to be used • Sign a Joinder Agreement, or complete forms to make PLAN the trustee of your existing trust • Fund your trust

25. When Planning Also Consider • Statutory durable power of attorney • For yourself and for your loved one with a disability • Health care agent / Advanced Directives • http://www.oag.state.md.us/Healthpol/AdvanceDirectives.htm • For yourself and for your loved one with a disability • Advance Directives for Mental Health Treatment • http://www.dhmh.state.md.us/mha/forms.html

26. For More Information • Visit our website: • www.planofmd-dc.org • Write or fax us: • PLAN of Maryland-D.C., Inc. • 604 S. Frederick Avenue, Suite 411 • Gaithersburg, MD 20877 • Tel: 301-740-8444 • Fax: 301-704-8544 • Call or e-mail us: • Bernie Raiche • braiche@planofmd-dc.org • Telephone 301-740-8444 X 222