Publications: NCARF Response To Best Practice In Supports And Services To Individuals With Developmental Disabilities

Executive Summary

The members of the North Carolina Association of Rehabilitation Facilities are very concerned about the lack of emphasis on employment in the Dec. 15 “Best Practices” document distributed for review.
The supported employment and long-term follow-up citations in the document are out of date and do not reflect current realities.
The document does not reflect a coordination of services affecting the leisure, employment and residential aspects of life.
Supported employment is a best practice, but the document should also address employment in affirmative businesses and micro-enterprises.
Other best practices regarding students at the outset of their working lives and retirees near the close of their working lives are not listed.
Person-centered planning based on informed choice is essential, but eliminating choices that middle-aged and older consumers may want runs contrary to both concepts.
While it was gratifying to see that Long Term Follow-up Employment received a section of its own, the state does not adequately fund the effort.

The paper does not address continuing problems with employer attitudes or with the large number of consumers needing private sector jobs. Members of the North Carolina Association of Rehabilitation Facilities (NCARF) provide employment services (including supported employment) to more than 8,000 individuals with disabilities. While some of the individuals we serve have co-occurring disorders, mental illnesses and other disabilities, the vast majority has developmental disabilities. We are extremely concerned with the lack of emphasis on employment in the Best Practices paper that was put out for comment. In your very first paragraph of the employment section, there is an acknowledgement that employment is an “important aspect of quality of life” and that “most of our waking hours are spent on the job.” However, in a document that devotes 46 pages to content only 2.5 pages relate to employment. The bibliography is equally telling. Out of 146 references only 3 are listed for employment and one of these (the on-line reference) is actually an article entitled “Olmstead and Supportive Housing: A Vision for the Future.”

It should also be noted that the citations in the body of the Best Practice document, employment section are from 14 to 26 years old and bear little relationship to the consumers served in supported employment in today’s environment. For example, in the third paragraph of the employment section, a 17 year-old study is cited to support SE being less costly than other services. This was from a time when SE was serving much less involved consumers who worked more hours and required much less long term follow-up (both in depth and quantity). The federally required two contacts a month may have been sufficient for many consumers 17 years ago, but today the consumer is more disabled and in need of more intensive long term support.

This same 17 year-old study also states SE to be “more productive in terms of earnings”. While that was definitely true at that time, we now have the development of affirmative enterprises in the State. Consumers participating in that model often make more money and have better benefits that those in supported employment.

The information included in the document is good information, but extremely incomplete and contradictory with the housing section. There is no mention anywhere in the document on the vital necessity of coordination between housing and employment. In part III (Housing and Residential Supports), B. Best Practice System Elements, the fifth bullet, the statement is made that “Sources of rental assistance/operational support must be expanded to supplement SSI income.”. If, as is stated in the employment section that “no one is too disabled to work.”, then it would seem that the extra support should be to supplement wages, not SSI, which has as its primary criteria that a person is unable to work. Our point is that there is no underlying concept in the best practices paper that people can and should work except in the employment section. That concept has to be woven through all sections if it is to be realized. It can not be an isolated concept.

In addition, service providers of both residential and employment supports must work together to provide opportunities and ensure a holistic environment for consumers that includes residential, employment and leisure components of life. If residential needs and leisure needs are not met, employment is frequently unsuccessful. Best practice should incorporate all aspects. This coordination must begin at the State level with a recognition and consideration of the importance of work as well as residential and leisure needs. This need does receive a one-sentence recognition in the employment section, Values and Philosophy, Person-Centered bulleted item; but this must be woven throughout the document.

When a person is placed into the community to work, especially if the person does not receive residential supports, a huge gap is created in their social life. Natural supports do not necessarily happen. We can not create a lonely isolated life. We must have a plan to provide for all needs. Residential, work and leisure are inextricably intertwined and best practice will demand that all three must be considered as a whole.

While nobody will deny that supported employment is a best practice, it is not the only best practice. Any document delineating best practice should include affirmative industries and micro-enterprises. Some service providers in North Carolina have converted their facility-based services to affirmative enterprises. There, many consumers receive the same wages and benefits as their non-disabled peers. Employees with and without disabilities are fully integrated throughout the work setting. The business environment is fully integrated. Vocational Rehabilitation recognizes these jobs as legitimate employment that meets the federal criteria for successful rehabilitation. The agencies in some cases are the biggest employer in the town. This is an excellent solution for rural areas that have seasonal employment and higher unemployment rates. In fact it is a best practice for any area.

Micro-enterprises allow consumers to own their own business. This provides an opportunity for many of our citizens in North Carolina who have severe disabilities, to live self-directed lives and achieve some level of financial independence – a best practice.

While supported employment is the thrust of the employment section, the article fails to discuss both group and individual supported employment. Enclaves and mobile crews provide an opportunity for consumers and their parents to have a positive employment experience and gain confidence towards achieving individual supported employment. It provides opportunities for persons who face both physical and mental challenges to succeed.

Nowhere does the best practice document mention the need for early intervention for students to meet employment needs. We must begin to work with students and their parents early in their school career, certainly no later than age 14. Students should receive exposure and experience with many vocational clusters and be able to make informed employment choices by the time they are ready to graduate. When they leave school, they should have either paid employment in the community or a plan to further their training. There should be no expectation that they will need segregated facility-based services.

The document also leaves out best practices in employment for our seniors with disabilities. Surely, they should know what retirement is, what the options are in their community and how to access these options. Informed choice for retirement is as important as informed choice for employment. Currently, we expect our seniors with developmental disabilities to work until the day they die; this is another area in which a careful coordination of effort between residential/housing providers and vocational/employment providers is desperately needed. Best practice would offer them the same choices that persons without disabilities have.

With person-centered planning at the heart of the best practice document, it must be recognized that choice is an important part of best practice. Sheltered employment is certainly not a best practice; however, many of our seniors and older, middle-aged consumers have no desire to leave this environment. Furthermore, their families and/or legal guardians frequently will not support or permit their departure from the safety and security of a supervised work environment. We agree that they must have the opportunity to experience community-based work, and then be allowed to make a true choice. Their choice may not be what the State considers best practice, but in the light of person-centered planning it should be acceptable. School-to-work transition activities, as mentioned earlier, must start sooner and include an education component for families. If we focus on creating the right environment for our students, we will naturally transition into community-based services. Best practices must provide transitory options for all ages.

Finally, while it was gratifying to see that Long Term Follow-up Employment Supports received a section all its own, the State should provide adequate funding. We know that LTF is the key for continued success for consumers, but the State has never funded the service. If NC wants to transition successfully from the current mode of service delivery to an integrated work environment of the consumer’s choice with no disruption of services, then it is vital that the service be funded fully.

In summary, the current document is woefully inadequate, incomplete and fails to provide for coordination between services. With these recommended changes, the current document can be made complete, and will serve as a blueprint for the development of a comprehensive developmental disabilities service delivery system.

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