Rising Care Costs Can Affect Long-Term Support With Special Needs

Lifetime support for an individual with a disability requires people. This statement may sound obvious; however, in planning for an individual’s future, the people who will care for them are rarely discussed in detail. Special Needs Planning often stops after the discussion of a Special Needs Trust, future guardians, and government benefits. It is common to believe that if a family sets up a Special Needs Trust, chooses a future guardian, and secures government benefits for their loved one’s entire life that all is taken care of.

Rising Care Costs Can Affect Long-Term Support With Special Needs https://www.autismparentingmagazine.com/long-term-support-with-autism/

The reason for this belief is because, in the past, government benefits would provide many basic care needs for an individual with a diagnosis. Due to the rising cost of care and the fiscal stress on government benefit programs, the definition of basic care comes with very low compensation rates for the individuals that actually provide this daily care, called direct support professionals. This low compensation rate results in a high turnover of professionals (45%) which leads to an instability of care, and to possible institutional care.

Patty Lyons, the mother of an adult daughter with special needs states, “The choices for me if we cannot keep a waiver provider, are to quit my job, or to surrender my daughter to the state and put her in a residential facility.” Jewel Herbig, an owner of a disabilities services agency echoes this difficulty, “In my search to hire people, I’ve found it really difficult to find quality people I can trust.” Herbig continues to explain that the hourly pay,about $10 per hour, is not much of a draw.

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As families continue to struggle with this reality, and with the ever-looming cuts to Medicaid due to the overall expenses of federal and state governments, families must consider this as they plan for their loved one’s future support. It has become more vital that families need to project their child’s future financial needs so that they can have a clear picture of the amount of money needed to fund their child’s Special Needs Trust. When considering this financial target, families must include an additional amount of money that the trust can provide for direct support professionals. By doing so, the hope is to retain the care providers for the individual with a diagnosis which keeps stability in their life and allows them to live in the community lowering the risk of being forced to live in assisted living, nursing home, or other institutional care setting.


For more information on how to prepare for the future, be sure to contact a financial advisor who specializes in serving families with special needs. A Special Needs Plan is driven by their purpose of leading families to independence through an on-going multi-generational plan. A Special Needs Plan is passionate about families confidently moving forward.

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This article was featured in Issue 78 – Back to School Success

Ryan Platt

Ryan F. Platt, MBA, ChFC, ChSNC, completed his Special Care Planner Certification in 2005 at the American College in Bryn Mawr, PA, in which he received advanced training in estate and tax planning, special needs trusts, government programs, and the emotional dynamics of working with people and families with special needs loved ones. In 2013, he went on to complete the Chartered Special Needs Consultant designation. A pioneer in his field, Ryan is one of only a few planners certified through Massachusetts Mutual Life Insurance Company (MassMutual) and the American College in Special Care Planning in Charlotte. He is the founder of A Special Needs Plan.