Hot Legal Topics in Planning/Advocating for Folks with Disabilities & Their Families

1. Hot Legal Topics in Planning/Advocating for Folks with Disabilities & Their Families Patricia E. Kefalas Dudek Patricia E. Kefalas Dudek & Associates 30445 Northwestern Hwy, Suite 250 Farmington Hills, MI 48334 (248) 254-3462 Email: pdudek@pekdadvocacy.com Website: www.pekdadvocacy.com

2. The Affordable Care Act’s Impact Medicaid Eligibility Pathways Eligibility Renewals Application Accessibility & Assistance Medicaid Benefits Packages Identifying Applicants Looking Ahead

3. The Affordable Care Act (ACA) • The Affordable Care Act (ACA) is the most important legislation affecting special needs planning since 1993 when Congress enacted 42 USC §1396p(d) that authorized special needs trusts (SNTs). Much of the ACA is focused on protecting the rights of people with chronic, long-term physical or cognitive conditions. In this article, we will discuss the important features of the ACA to allow the special needs practitioner to provide proper advice to their clients and how the ACA will affect existing special needs plans. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

4. Access to Health Care • Under the provisions of the ACA, many of the barriers to private health care for persons with disabilities will disappear. The biggest change is that a pre-existing condition will no longer deny an individual access to private health care. The ACA also makes private health care more attractive because it removes the lifetime limits on health insurance that made private plans unattractive to many persons with profound disabilities. An added benefit of the ACA is that it requires private health care coverage for children (up to age 26) on a parent’s plan even if that child has moved away, is disabled, gone to school, or married. Also, the ACA caps the amount of money that a person will have to pay out-of-pocket each year on premiums and deductibles. For example, if the person in California earns less than $17,235 a year, the annual out-of-pocket limit he or she has to pay is $2,250. Otherwise, the general ACA annual out-of-pocket limit for an individual is $6,250 per year. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

5. Access to Health Care • There is a mandate that all persons in the United States be covered by health care. Because so many persons with disabilities have limited income, the ACA provides ways to pay premiums at a reduced cost. If the person with a disability has income, he or she can pay a reduced premium even if they earn up to 400 percent of the federal poverty limit (FPL) ($45,960 for individual in 2013). For example, for the year 2014 in California, a person earning less than $17,235 a year will pay between $19 to $57 a month for a premium based on their actual income. Excerpt from: How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

6. Expanded Access to Medicaid • For those persons with disabilities who have little to no income, access to Medicaid (for people between the ages of 19 to 65) will be expanded to include individuals with incomes up to 133 percent of the FPL (plus an automatic 5 percent income disregard) ($15,586 for individual in 2013). There is no resource limitation for this new expanded Medicaid program. Thus, for new people qualifying for Medicaid, they can have more than the $2,000 in resources and still qualify for Medicaid if their income is below 138 percent of the FPL. It is important to note that this new expanded program does not apply to persons currently receiving Medicaid, for those over age 65 applying for long-term care nursing home care, and some other restrictions. Further, not every state has agreed to participate in Medicaid expansion, so it is important to see if your state has agreed to implement expanded Medicaid. Excerpt from:How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

7. Expanded Access to Medicaid • There are several important health care benefits generally not covered by the ACA and private health care that are important to persons with disabilities. Two of the most important (and expensive) benefits that the ACA will not cover include payment for long-term skilled nursing care and payments for in-home care giving services. Thus, for clients with disabilities who require nursing home level care or who require caregivers in order to remain independent in the community will likely still need Medicaid to assist them with their ongoing care. In some states, Medicaid provides unique services for the developmentally disabled that specialize in support for independent living and other related services. Thus, it is important for the practitioner to determine what health care-related services for persons with disabilities are covered by Medicaid (but not through private health care) in determining whether a client should give up his or her government-paid-for health care. Excerpt from:How the Affordable Care Act Affects Special Needs Planning By: Kevin Urbatsch, Esq. & Michelle Fuller, Esq

8. Key Provisions in ACA • The Affordable Care Act has set new standards, called essential health benefits, outlining what health insurance companies must now cover. But there's a catch: Insurance firms can still pick and choose to some degree which specific therapies they'll cover within some categories of benefit. And the way insurers interpret the rules could turn out to be a big deal for people with disabilities who need ongoing therapy to improve their day-to-day lives. • The new rules for what health insurance companies have to cover may still change. Federal regulators plan to review them as the health law rolls out and could make changes in 2016. Excerpt from:Obamacare Presents Complex Choices For People with Disabilities

9. Essential Benefit Package The ACA links the essential health benefits package to limits on cost-sharing. So health plans that are required to provide essential health benefits will also be required to limit the amount consumers will have to pay out-of-pocket. Specifically, health plans will be prohibited from requiring consumers to pay annual cost-sharing that is greater than the limits for high deductible plans linked to health savings accounts. Currently, those limits are $5,950 per year for individuals and $11,900 per year for families. In addition, small group plans must limit deductibles to $2,000 for individual coverage and $4,000 for family coverage. As with all health plans under the ACA, there is no cost-sharing for certain preventive health services recommended by the United States Preventive Services Task Force. To view full article: Essential Benefits

10. Essential Benefit Covered Under the ACA • Ambulatory patient services • Emergency services • Hospitalization • Maternity and newborn care • Mental health and substance use disorder services • Prescription drugs • Rehabilitative and habilitative services and devices • Laboratory services • Preventive and wellness services • Chronic disease management • Pediatric services, including oral and vision care

11. What are the cost-sharing rules for the essential health benefits? The ACA links the essential health benefits package to limits on cost-sharing. So health plans that are required to provide essential health benefits will also be required to limit the amount consumers will have to pay out-of-pocket. Specifically, health plans will be prohibited from requiring consumers to pay annual cost-sharing that is greater than the limits for high deductible plans linked to health savings accounts. Currently, those limits are $5,950 per year for individuals and $11,900 per year for families. In addition, small group plans must limit deductibles to $2,000 for individual coverage and $4,000 for family coverage. As with all health plans under the ACA, there is no cost-sharing for certain preventive health services recommended by the United States Preventive Services Task Force. To view full article: Essential Benefits

12. Are your employees ready for consumer-driven health care? • If you’re an employer, it’s likely that your workers have been reluctant to educate themselves about their choices in light of upcoming changes to the health care scene, such as the implementation of state and federal exchanges under the Patient Protection and Affordable Care Act (ACA). That may be because they’re waiting for you to make the first move. • According to results from the recently released 2013 AflacWorkForcesReport, 75% of workers surveyed said that they thought their employers would educate them about changes to their health care coverage as a result of the ACA;s health care reform provisions, but only 13% of employers said that educating employees about health care reform was important to their organization.

13. According to results reported by Aflac, 53% of employers have implemented a high-deductible health plan (HDHP) in the last three years, and Aflac says this is a growing trend. The survey also shows that, despite the shift toward HDHPs and defined contribution health care plans by employers, along with the upcoming implementation of state and federal exchanges, 55% of workers said they had done nothing to prepare for possible changes to the health care system. To view full article:Consumer-Driven Health Care

14. Mental Health Parity In 2008, Congress passed the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act taking a great step forward in the decade-plus fight to end insurance discrimination against those seeking treatment for mental health and substance use disorders. This law requires health insurance to cover both mental and physical health equally. Under this law, insurance companies can no longer arbitrarily limit the number of hospital days or outpatient treatment sessions, or assign higher co-payments or deductibles for those in need of psychological services. To view full article: Mental Health Parity

15. Mental Health Parity The 2008 act closes several of the loopholes left by the 1996 Mental Health Parity Act and extends equal coverage to all aspects of health insurance plans, including day and visit limits, dollar limits, coinsurance, co-payments, deductibles and out-of-pocket maximums. It preserves existing state parity and consumer protection laws while extending protection of mental health services to 82 million Americans not protected by state laws. The bill also ensures mental health coverage for both in network and out-of-network services. To view full article: Mental Health Parity

16. Could a Trustee of SNT Determine to go Without Insurance? • What happens if I don’t sign up for Obamacare? • You won’t have health insurance. You’ll be responsible for every from the flu shots to major surgery. • I thought I could just sign up when I need it? • Not exactly. The law requires insurance companies to cover people with pre-existing conditions, but you still have to sign up during the enrollment period. That will be from October 1, 2013 to March 31, 2014. • Serious problems in Michigan with delayed Medicaid Expansion and states with no Medicaid expansion

17. Could a Trustee of SNT Determine to go Without Insurance?(cont.) • So what if I get sick after March 31, 2013? • You’ll have to wait until the next enrolment period, which begins October 1, 2014. Until your new coverage kicks in January 1, 2015, you’ll have to pay for any medical costs. • What if I lose my insurance during the year? • You can sign up them. Outside of the regular enrollment period, people can sign up for insurance when they have a major life-changing event (i.e. getting married, changing jobs, having a baby, or moving to a new state)

18. Could a Trustee of SNT Determine to go Without Insurance?(cont.) • Are there any penalties for not signing up? • Yes, if you don’t sign up for insurance, you’ll pay a fine when you do you taxes in 2015. The fine will be $95.00 or 1% of your annual income, whichever is higher. And in future years, it will be even higher. • What if I refuse to pay the fine? • The IRS will take the money out of any refund you would receive on your federal income tax. It is not allowed to put you in jail or seize your property for failing to pay the fine, however.

19. Could a Trustee of SNT Determine to go Without Insurance?(cont.) • When do I have to sign up? • Technically speaking, you need to have insurance on January 1, 2014. However, the enrollment period lasts until March 31, 2013 and you may be able to sign up later in the year if you have a major life event. • What if I am uninsured for part of the year? • You won’t pay the full fine. The amount is prorated, so you would just pay for the number of months you were uninsured. Also, gaps of less than three (3) months in a given year aren’t counted.

20. Could a Trustee of SNT Determine to go Without Insurance?(cont.) • Are there any other exceptions? • Yes, but they are limited. Certain religious groups, such as the Amish, and federally recognized Indian tribes don’t have to sign up. You can also get exemption if you have a lower income, especially if your state rejected the Medicaid expansion. • Medicare or Medicaid is enough! (Either only Part A Or Parts A & B) To view full article: Obamacare

21. What if I have Medicare? • Medicare isn’t part of the Health Insurance Marketplace, so you don’t need to do anything. If you have Medicare, you are considered covered. • The Marketplace won’t affect your Medicare choices, and your benefits won’t be changing. No matter how you get Medicare, whether through Original Medicare or a Medicare Advantage Plan, you’ll still have the same benefits and security you have now. You won’t have to make any changes. • Medicare’s Open Enrollment Period (October 15-December 7) hasn’t changed. To view full article: Donut Hole

22. ACA Provisions • Expanded Medicare benefits for preventive care, drug coverage • Medicare benefits have expanded under the health care law–things like free preventive benefits, cancer screenings, and an annual wellness visit. • You can also save money if you’re in the prescription drug “donut hole” with discounts on brand-name prescription drugs. To view full article: Donut Hole

23. Medicaid Eligibility Pathways for People with Disabilities • In states that implement the ACA’s Medicaid expansion, more people with disabilities may qualify for Medicaid based solely on their low income status, which enables them to enroll in coverage as quickly as possible, without waiting for a disability determination • People with disabilities can qualify for Medicaid at somewhat higher incomes, up to state-established ceilings, if they also meet disability-related eligibility criteria. • People with disabilities who qualify for Medicaid based solely on their low income status can enroll in coverage on that basis and start receiving benefits while their disability-related Medicaid eligibility is being determined. View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

24. Medicaid Benefits Packages • States must provide alternative benefit plan (ABP) coverage to adults newly eligible for Medicaid. • In states that do not fully align their new adult ABP with their state plan benefits, a beneficiary’s eligibility pathway determines the contents of her benefits package. View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

25. Identifying Applicants with Disabilities • A key function of the application form is to identify people who may be exempt from ABP enrollment or who may be eligible for Medicaid in a disability-related coverage group because these characteristics can affect the benefits package that a beneficiary receives.  • Because some people may be reluctant to self-identify as having a disability, it will be important for applicants to understand that answering the disability screening questions can affect the contents of their benefits package.  • For people applying for coverage through a Marketplace that assesses potential Medicaid eligibility (rather than determining final Medicaid eligibility), there are additional application questions that can affect the type of Medicaid eligibility determination and consequently the benefits package that they receive View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

26. Eligibility Renewals • As of 2014, there are new streamlined renewal and reconsideration procedures for poverty-related coverage groups that states also can opt to apply to disability-related coverage groups. View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

27. Application Accessibility & Assistance • State Medicaid agencies must ensure that their services are accessible to people with disabilities.  • For example, state Medicaid agencies must provide auxiliary aids and services at no cost to applicants and beneficiaries; provide information and assistance with the application process in a way that is accessible to people with disabilities; and use accessible applications, forms, and notices.  • Marketplaces are similarly prohibited from discriminating on the basis of disability and must ensure that their services are accessible to people with disabilities. View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

28. Looking Ahead • The ACA’s Medicaid eligibility and enrollment changes may affect people with disabilities.  • The 2014 rules seek to allow people with disabilities to enroll in coverage as quickly as possible (either in Medicaid based solely on their low income or in a Marketplace QHP with APTC, where eligible), even while their Medicaid eligibility in a disability-related coverage group is being determined.   • The 2014 rules also seek to ensure that people who qualify in a disability-related Medicaid coverage group or who are medically frail can access the most appropriate benefits package for their needs.  • As these rules are implemented, it will be important to continue to assess how eligibility and benefits for people with disabilities are affected by the new streamlined eligibility, enrollment and renewal procedures, coordination between state Medicaid agencies and the Marketplaces,  application screening questions, and the extent to which states align their new adult ABPs with state plan benefits. View Full Article:The Affordable Care Act's Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities

29. Additional Resources • MI Signs Memo of Understanding for Integrated Care Program

30. ADA Issues Subminimum Wages Fair Housing Rhode Island Services/ Waivers

31. Rhode Island Agrees to Keep Residents with Mental Disabilities Out of Forced Menial Labor • Residents with mental disabilities would no longer be forced to work long hours doing manual labor for little money and instead would be given the chance at regular employment that pays at least the minimum wage under a settlement • The U.S. Department of Justice and Rhode Island entered into a court-ordered consent decree that will require a gradual but dramatic overhaul of employment services to the mentally disabled, officials said. The agreement, which the Justice Department says is the first statewide settlement of its kind, covers about 3,250 people. View Full Article:Rhode Island Agrees to Keep Residents with Mental Disabilities Out of Forced Menial Labor

32. Rhode Island Agrees to Keep Residents with Mental Disabilities Out of Forced Menial Labor • The settlement resolves allegations that the state has violated the American with Disabilities Act for years by placing residents with intellectual and developmental disabilities in segregated centers, called "sheltered workshops." In the workshops, disabled Rhode Islanders who rely on state services had minimal contact with the broader community and were assigned tasks such as unwrapping bars of soap or putting tops on lotion bottles, the Justice Department said. The average pay was $2.21 an hour, according to state data obtained by the Justice Department. View Full Article:Rhode Island Agrees to Keep Residents with Mental Disabilities Out of Forced Menial Labor

33. Subminimum Wages for the Disabled • There are four types of employers in the U.S. that can pay subminimum wages to workers with disabilities. • They are • Sheltered workshops (also known as community rehabilitation centers), or facilities that provide rehabilitation and employment • Hospitals or institutions that employ people also receiving residential care • Private businesses • Schools that employ student with disabilities either at the school or in the local community View Full Article:Subminimum Wages For the Disabled: Godsend Or Exploitation?

34. Work Incentives Planning & Assistance Website • In August of this year, the Social Security Administration reinstated the Work Incentives Planning and Assistance program (WIPA). WIPA is a step by step process, to assist people with disabilities who are receiving benefits from Social Security, toward a goal of employment and greater financial independence, by understanding how to use the many incentives to work that are available. Working with a Community Work Incentives Coordinator (CWIC), eligible individuals will also gain an understanding of how employment will affect their Medicare, Medicaid, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), and other benefits they may receive. • In Michigan, three organizations were granted the opportunity to coordinate this program, The Arc Michigan, Goodwill Industries of Greater Detroit, and United Cerebral Palsy of Metropolitan Detroit. Between these three organizations, WIPA services are available throughout the state.   View Full Article:Work Incentives Planning Assistance Website

35. Additional Resources • Subminimum Wages For the Disabled: Godsend Or Exploitation? • By: Cheryl Corley; National Public Radio (4/23/14) • Feds Take Stand Against Sheltered Workshops • By: Shaun Heasley; Disability Scoop (4/2/13)

36. Fair Housing & Services The lawsuit, filed in the U.S. District Court for the Western District of Washington, alleges that Linda Barber, Bert Barber and Lori Thompson engaged in a pattern or practice of violating the Fair Housing Act or denied rights protected by the Act.  Specifically, the lawsuit asserts that the defendants established and implemented a discriminatory policy that allowed waiver of the defendants’ mandatory $1,000 “pet deposit” for service animals with specialized training, but not for other assistance animals, including emotional support animals.  The suit also alleges that, by refusing a tenant’s requests for a reasonable accommodation to waive the $1,000 pet deposit for her assistance animal, the defendants violated the Fair Housing Act. Excerpt from: Justice Department Files Fair Housing Lawsuit Against Owners and Managers of Rental Homes in Washington State for Discrimination Against Persons with Disabilities

37. Improving Lives Through Legal Advocacy • For over four decades, the Bazelon Center has taken on issues and cases that move the nation forward to guarantee rights, consumer choice, access to services, and autonomy to people with mental disabilities. • In recent years, a significant portion of work has focused on fulfilling the mandate that public systems support the true integration of people with mental disabilities, as set forth in the landmark 1999 U.S. Supreme Court decision Olmsteadv. L.C. • In FY 2012, our staff achieved watershed victories in two Olmstead cases, in addition to our other litigation across the country and related policy work. Excerpt from: Bazelon Center in Brief & Annual Report Summer 2013

38. DOJ Accuses Florida of Violating ADA - Olmstead • DOJ Findings Letter to Florida (September 2012) The United States issued a Findings Letter in September 2012 concluding that Florida is violating the ADA's integration mandate in its provision of services and supports to children with medically complex and medically fragile conditions. After a comprehensive investigation, the Department found that the State of Florida plans, structures, and administers a system of care that has led to the unnecessary institutionalization of children in nursing facilities and places children currently residing in the community at risk of unnecessary institutionalization. Excerpt from: DOJ Accuses Florida of Violating ADA

39. Americas with Disabilities Act Highlights Michigan’s Non-Compliance with Law • It was billed as a celebration of the landmark federal law intended to make sure disabled people have equal access to public facilities. • But the site in Flint chosen to celebrate the 23rd birthday of the Americans with Disabilities Act, Kearsley Park did not meet requirements of the ADA. • A wooden ramp had unsafe railings, broken planks and protruding bolts. Sidewalks weren’t level. A playground area was inaccessible. People who used wheelchairs had to roll across grass to reach portable toilets that lacked raised signage for the blind. View Full Article:Michigan’s Non-Compliance with Law

40. State Plan Home & Community-Based Services • What is the purpose of this final rule? • The final rule supports enhancement of the quality of home and community-based services (HCBS), adds protections for individuals receiving services, and provides additional flexibility to states that participate in the various Medicaid programs authorized under section 1915 of the Social Security Act (the Act). Highlights of this final rule include: • Provides implementing regulations for section 1915(i) State Plan HCBS, including new flexibilities enacted under the Affordable Care Act to offer expanded HCBS and to target services to specific populations; • Defines and describes the requirements for home and community-based settings appropriate for the provision of HCBS under the Section 1915(c) HCBS waiver, 1915(i) State Plan HCBS and 1915(k) (Community First Choice) authorities; • Defines person-centered planning requirements across the 1915(c) and 1915(i) authorities; • Provides states with the option to combine coverage for multiple target populations into one waiver under Section 1915(c), to facilitate streamlined administration of 1915(c) HCBS waivers and to facilitate use of waiver design that focuses on functional needs. • Allows states to use a five-year renewal cycle to align concurrent waivers and state plan amendments that serve individuals eligible for both Medicaid and Medicare (dual eligibles), such as 1915(b) and 1915(c). • Provides CMS with additional compliance options beyond waiver termination for 1915(c) HCBS waiver programs. • Provides an additional exception to the general requirement that payment for services under a state plan must be made directly to the individual practitioner when the state is the primary source of employment for a class of individual practitioners. View Full Q&A:Questions & Answers on Waivers

41. State Plan Home & Community-Based Services • What are the major differences between the proposed rules and this final rule? • This final rule is a combined response to the public comments on the proposed rule published in the May 3, 2012 Federal Register (77 FR 26362) that pertain to the provisions of section 1915(i) HCBS and section 1915(k) Community First Choice benefit under the Medicaid state plans, provider payment reassignment, and the authority for a 5-year duration period for certain demonstration projects or waivers as well as the comments on the proposed rules published in the April 15, 2011 Federal Register (76 FR 21311) that pertain to section 1915(c) HCBS waivers. • The major substantive changes between the proposed rules and this final rule relate to the requirements for the qualities of settings that are eligible for reimbursement for the Medicaid home and community-based services (HCBS) provided under sections1915(c), • 1915(i) and 1915(k) of the Act. Over the course of rulemaking related to defining the qualities of home and community-based settings and in consideration of the public comments received, CMS moved away from defining settings by the qualities they do not have to defining them by the nature and quality of the participants’ experiences. The final rule establishes a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics. It also requires that states develop a process, approved by CMS, to transition their current HCBS programs to include settings that meet the requirements of the final rule. View Full Q&A:Questions & Answers on Waivers

42. State Plan Home & Community-Based Services • What does this final rule do for 1915(i) State plan HCBS? • The final rule provides implementing regulations for Section 1915(i) State Plan HCBS, including the new flexibilities and expanded service coverage enacted under the Affordable Care Act. • How will the final rule affect existing HCBS offered by states under 1915(c) waivers, state plan programs like the 1915(i) and 1915(k) and 1115 demonstrations? • A: The final rule establishes a set of requirements for home and community-based settings under the 1915(i), 1915(c) and 1915(k) Medicaid authorities, and a set of person-centered planning requirements for Medicaid HCBS participants under 1915(c) and 1915(i). States operating existing approved Medicaid HCBS programs will be expected to meet or transition to the new requirements, in accordance with the timelines articulated in the rule. CMS will also include requirements in the special terms and conditions of 1115 demonstrations that impact individuals receiving HCBS services. View Full Q&A:Questions & Answers on Waivers

43. Coordinating Special Needs Trustwith Government Benefits Coordination of Public Benefits Funding Letter of Intent

44. New SSA Fact Guide for National Trust Training • This guide addresses…. • Common Types of Trusts • Self- Funded Trusts • Third-Party Trust • Testamentary Trust • Totten Trusts • Tribal Trust • New Rules for Exception A Trust • New Rules for Pooled Trust View Full Guide:Fact Guide for National Trust Training

45. Funding a Special Needs Trust: How Much is Enough? • The first step in determining the amount to protect in an SNT is considering your goals and expectations for your child's future. • If you haven't yet created a Memorandum of Intent, also called a Letter of Intent or a Life Plan, this is the time to draft such a document. It should address factors such as your child's medical condition, legal advocacy needs, ability to work and desired living arrangements, all of which will drive the special needs calculations. • This really allows for details on how to coordinate public benefits with the private resources • Look at samples: important to address private health insurance, uncovered Medicaid, dental specifically.

46. Letter of Intent • A Letter of Intent is one of the most important documents a parent can complete for the child’s future care-givers • This is not a stand-alone document; it should be incorporated into an estate planning process • Can be used when caring for parents or grandparents as well • The Letter of Intent should provide the trustee with guidance as to what “special needs” the beneficiary has or will have and define the quality of life as quality means different things to different people • The Letter of Intent should be frequently updated as the beneficiary’s needs change

47. Sample Letters of Intent • http://www.pekdadvocacy.com/firm-news/client-intake/attachment/letter-of-intent-information-regarding-child/ • http://www.pekdadvocacy.com/documents/pattispublications/Representing/Att7.pdf • http://www.pekdadvocacy.com/documents/pattispublications/Representing/Att8.pdf

48. Quality of Life Social, travel, recreation, etc. Education Housing with Person Directed Supports Transportation Medical Care and Equipment Real Employment Letter Of Intent Be Specific!

49. Transportation Phone Cable Social / Recreational Housing Rent from SSI or SSDI Rent $ Family Community Support Services CMH Support Services (Waiver) Dept. of Community Health-formerly FIA Adult Home Help Services Food Stamps Roommate Beneficiary Coordination of Public Benefits with SNTsHow It Works Special Needs Trust Link to: Benefits Checklist

50. Seclusion & Restraint